CHAPTER FOUR: POSITIVE AND NEGATIVE GENETIC INTERVENTIONS

 

I.  Old Distinctions in New Clothes

Positive and Negative Eugenic Goals for Populations

Earlier in this century, the eugenics movement was more concerned with the genetic quality or "health" of populations than with the health and welfare of individuals.  Indeed, as noted in Chapter Two, some in that movement were concerned that keeping "unfit" individuals healthy might have dysgenic effects.  This focus on populations rather than individuals is part of what makes the movement and its goals seem so threatening. 

          We also saw that the eugenics movement had two main goals.  Its negative goal was the reduction in "dysgenic" effects or burdens on the gene pool by eliminating genetic diseases, disorders, disabilities, and other "defects."  Negative eugenics aimed to improve the health and performance of the population by preventing reproduction of its least healthy and least capable members.  This goal required severe restrictions on reproductive rights, for those with "defects" had to be kept from reproducing, if necessary through the involuntary sterilization of "mental defectives."

          The goal of "positive eugenics" was to improve the health and performance of the population by increasing the rate of reproduction of those harboring its best traits and capabilities.  Pursuing this goal also involved modifying traditional reproductive practices, though usually through voluntary measures.  For example, as also noted in Chapter Two, to inspire the right marriage choices, there were competitions at county fairs aimed at displaying the best human "breeding stock."

          The boundary between positive and negative eugenics did not mark a generally accepted moral boundary for proponents of the eugenics movement, though some attributed moral significance to it. Rather, it reflected two aspects of the same goal of improving a population.  The distinction between them rested crucially on drawing a further line between what was considered sub- or abnormal or defective and what was considered normal or even superior.  The scope of negative eugenics--that is, what counted as defects to be eliminated--clearly depended on what conception of normal or even superior phenotype and genotype was used.  To the extent that "defects" were limited to clear, paradigmatic cases of disease or disability, negative eugenics could be portrayed as a form of disease prevention--though the infringements of reproductive rights committed in its name are disturbing and unacceptable regardless of how benign the categorization of disease happened to be.

          A highly idealized or perfectionist view of superior or normal traits would mean that a trait we ordinarily take to be normal would count as "defective."  Elimination of these traits would then become the legitimate target of negative eugenics.  To the extent that racial stereotypes of "higher" and "lower" races or "socially superior" and "inferior types" were involved in defining normal and defective traits, negative eugenics risked becoming--and in the United States and Germany, dramatically became--racist or even genocidal.

          Many of the most serious abuses were actually committed in the name of negative rather than positive eugenics.  The seemingly benign goal of disease prevention was transformed into the goal of people prevention (or even elimination), at least for those groups of people harboring "defective" traits.  Today, we are at least as horrified at some of the ways the distinction between normal and defective was drawn as we are at the infringements of reproductive rights involved in the pursuit of eugenic goals.  We are appalled at the ways in which bad science was harnessed to serve discriminatary attitudes toward race, class, and disability.

 

Positive and Negative Interventions and the Health and Welfare of Individuals

Today a distinction is commonly drawn between negative and positive "genetic interventions."  As noted in Chapter One, we use this latter term in a very broad sense to include somatic or germline uses of modern genetic technologies and pharmacological applications of those technologies, as well as uses of genetic technology in screening aimed at family planning.  As in its earlier use, the negative/positive distinction depends on our being able to distinguish disease, disorder, impairment or disability from normal traits or capabilities. 

          In many contemporary discussions, the negative/positive distinction is used to draw a fundamental moral boundary.  There is a presumption that negative genetic interventions--ranging from screening and selective abortions to somatic cell and (more problematically) germline replacement therapy--are morally permissible, whereas positive interventions are morally impermissible or at least highly problematic (Anderson 1990, 1980, 1985, 1988; cf. Glover 1988; Kitcher 1995).

          The explanation for this presumption, which is surprising in light of the serious abuses committed in the name of negative eugenics, is that negative genetic interventions are in general no different from other medical treatments, whether preventive or curative, of disease or impairment, whereas positive genetic interventions are aimed at the morally problematic enhancement of normal traits and capabilities.  The implication is that there is little that is morally problematic about treating disease but there may be much moral controversy about which normal traits, if any, should be enhanced.  Obviously, if this negative/positive distinction translates into the distinction between permissible and impermissible uses of genetic interventions, it would be of great importance for public policy, and that explains the interest in this issue and our focus on it in this chapter. 

          It is important not to confuse the negative/positive distinction with the difference between somatic and germline replacement therapies--that is, between replacing genetic material in the somatic cells of an individual (affecting the expression of some trait solely in that individual) and replacing genetic material in germ cells (affecting the expression of traits for the individual resulting from those germ cells and his or her descendants).

          The somatic-germline distinction, so prominent in the literature on genetic technologies, is often used to draw a similar line between morally permissible and morally impermissible or suspect interventions (Council For Responsible Genetics 1993).  But it cuts across the distinction between negative and positive genetic engineering.  A somatic replacement intervention could be pursued, had we the technology, to correct a defect or to enhance an otherwise normal capability.  The same is true for germline replacements.  Any systematic differences in risks and uncertainties, in the relation between risks and benefits, or in the prospects for obtaining informed consent of the affected party that support different moral conclusions about the permissibility of somatic and germline interventions will be independent of the distinction between negative and positive interventions (Kitcher 1995), which is our concern here.

          Having noted that the shadow of the negative/positive eugenics distinction falls darkly on the negative/positive genetic intervention distinction, it is important to emphasize some decisive differences in the social context (discussed in more detail in Chapter Two).  One important difference is that the primary concerns of those interested in either somatic or germline gene replacement today is not the "health" or "capability" of populations or the "quality" of the gene pool, but the health and well-being of individuals and their descendants.  In addition, there is a greatly enhanced respect for and legal recognition of individual reproductive freedom, as well as for the requirement that voluntary, informed consent or its legitimate proxy be obtained for all medical (and experimental) interventions.

          Contemporary developments in genetics also take place on the heels of a highly successful disabilities rights movement.  Activists have educated the public about people with disabilities, established strong legal protections for them, and moved the public to broader acceptance of the "diversity" they represent.  Finally, the contemporary positive/negative intervention distinction is drawn in a period when we are still highly sensitive to, and frightened by, the historically recent slide from eugenics to genocide. 

          Together these differences in the social context do much to dispel the shadow cast by the eugenics movement. Nevertheless, we are still far from a worldwide climate in which racist ideology is no longer a threat.  We continue to witness "ethnic cleansing" and genocide in parts of Europe and Africa; we see active racist movements even in liberal democracies promoting ideology that explicitly invokes Nazi ideas with favor.  Echoes of racism underlie the appeal of many of the current "hot" social reform topics in the United States--affirmative action, welfare reform, crime, and gun control.  Much but not all has changed.  We leave these comments on the social context, however, to concentrate on the moral issues surrounding the positive/negative distinction and its uses.

 

Moral Boundaries and the Positive/Negative Distinction

The question remains, Can the negative/positive intervention distinction be drawn as cleanly as its proponents imply, and with anything like the moral and public policy implications they suggest?  We believe the distinction and the moral implications drawn from it deserve more careful examination for two reasons.

          First, the treatment/enhancement distinction on which the contrast between negative and positive intervention rests is used for a very different moral purpose in most medical and medical insurance contexts.  Specifically, it is currently used to draw a line between services that are obligatory to provide to others--for example, in private or public insurance schemes--and those that are not.  But a line between what is obligatory and nonobligatory in insurance schemes is not to be confused with a line between what it is permissible and impermissible for anyone to do with genetic interventions.  Obviously, what is obligatory in an insurance scheme is permissible, and what is impermissible for anyone to do cannot be obligatory in insurance schemes. But what is nonobligatory in insurance may be either permissible or impermissible for individuals to do, and what is permissible for individuals to do may be either obligatory or nonobligatory in insurance.  So, even given the distinction between treatments and enhancements, we shall have to consider whether this gives us any guidance on the boundary between permissible and impermissible. 

          Second, the treatment/enhancement distinction itself has been sharply criticized even in its current use for reasons that must be taken seriously.  To decide whether the negative/positive genetic intervention distinction has any public policy implications--that is, whether it helps us draw any moral boundaries--we will have to consider more carefully the treatment/enhancement distinction on which it rests.  In the remainder of this chapter, we shall consider various objections to the treatment/enhancement distinction: that it is difficult to draw, that it does not give us the boundary between what is obligatory and nonobligatory to provide in medical insurance schemes, and that it leaves us with hard cases that make the distinction seem arbitrary.

          To resolve some of these issues, we will have to discuss alternative accounts of our obligations to assist others with medical services, including those based on genetic technologies.  Specifically, we shall consider the suggestion discussed in Chapter Three, by one of the more expansive interpretations of the level playing field conception of equal opportunity and by resource egalitarianism, that we drop the distinction between treatments and enhancements altogether in favor of more directly assessing whether an intervention is required because it equalizes opportunities.

          On that view, which we dubbed the brute luck view (following Scanlon), equality of opportunity requires eliminating all disadvantaging deficits in capabilities for which an individual is not responsible, whether or not they are the result of disease or impairment or merely the result of bad luck in a natural lottery for (otherwise normal) capabilities.  A supporting intuition for this expansive account of equal opportunity is the claim that contingencies in the natural lottery are as morally arbitrary as those in the social lottery, so that if equal opportunity is supposed to correct for social contingencies, it also ought to correct for natural ones that produce unchosen disadvantages.

          In this chapter, we explore and try to motivate further an alternative, more restrictive approach to the notion of equal opportunity and its implications for our obligations in health care.  Described briefly in Chapter Three as the social structural view, this conception of justice supports a qualified and limited defense of the treatment/enhancement distinction. By drawing out the implications of the social structural view, we will make much more concrete the rather abstract examination of justice in Chapter Three and bring it into closer contact with basic issues of social policy.

     Before trying to defend the distinction between positive and negative intervention or a theoretical perspective that uses it, we first reinforce some of the theoretical doubts about it raised in the previous chapter.  We do so by focusing on a range of "hard cases" drawn from actual medical practice, in which use of the distinction sometimes seems especially problematic, even though it is part of a widely accepted insurance practice.  We then reverse course, defending on both policy and theoretical grounds a more limited goal of maintaining "normal functioning" through health care rather than the more expansive goals that might be supported by the brute luck view.  Nevertheless, this approach, though different in its theoretical conception from the more expansive brute luck conception of equal opportunity, comes very close to it in its practical implications.  This convergence in practice, which was briefly noted in Chapter Three, is of considerable interest itself.

          The limited defense offered here of the treatment/enhancement distinction means it cannot provide a clear or unequivocal guide to the moral boundaries between what is obligatory and nonobligatory to provide in insurance or between what it is permissible and impermissible for individuals to do.  Neverthless, it has a useful, if modest, bearing on each, especially the former.  In the remainder of this chapter, we are concerned more with negative genetic interventions and the obligatory/nonobligatory boundary.  In Chapter Six, we explore further the general issue of improving our offspring through genetic interventions, both positive and negative.

 

II. Treatment Versus Enhancement: Wide Use, Hard Cases, Strong Criticism

Insurance Coverage and "Medical Necessity"

As noted, the treatment/enhancement distinction draws a line between services or interventions meant to prevent or cure (or otherwise ameliorate) conditions viewed as diseases or impairments and the interventions that improve a condition viewed as a normal function or feature of members of our species.  Glover (OTA 199X) comments that, like night and day, the distinction may pose boundary problems, but the line it draws is nevertheless useful.  We will have to assess whether he is underestimating the challenges to the distinction.  Still, the line drawn here is widely appealed to in medical practice and medical insurance contexts, as well as in our everyday thinking about the medical services we do and should assist people in obtaining.

          The treatment/enhancement distinction is closely related to the concept of "medical necessity" that appears in legislation regulating public insurance in both the United States and Canada, and in private insurance contracts.  Medically necessary services are those that effectively treat physical or mental disease and impairment or ameliorate conditions deriving from them (Daniels and Sabin 1991, Sabin and Daniels 1994).  They may effectively produce benefits for other conditions, but those do not count as medically necessary.

          For example, insurance coverage is provided by public and private schemes for growth hormone treatment for children projected to be very short, provided that there is an underlying disease condition, such as a diagnosable growth hormone deficiency or Turner's Syndrome.  If there is no underlying disease condition, insurers do not cover the treatment for children whose parents simply want them to be taller, regardless of how short they will be.  Similarly, insurers will generally reimburse--and in some states, like Massachusetts, they are mandated to reimburse--reconstructive breast surgery following mastectomy or trauma.  But they do not reimburse "cosmetic" surgery, however strongly a woman may feel that her life will be improved if her breasts are made larger or smaller.

          The same distinction plays a role in coverage for mental health therapies.  Consider the following cases illustrating coverage policy within the Harvard Community Health Plan (HCHP) prior to 1994, then a staff-model HMO that served over 550,000 people in New England (the cases are drawn from Sabin and Daniels 1994).  An adult patient with a history of bipolar disorder had been stabilized on lithium for some years.  He remained shy, however, and was referred to an out-of-plan group therapy situation, from which he clearly benefited over a period of several years.  In its original benefit structure, this long-term treatment could not have been covered by HCHP.  HCHP revised its benefit structure, allowing an "extended benefit" that would cover protracted therapy of this sort without extensive co-pays provided treatment was for a serious condition.  But does treatment of shyness count as treatment of a serious disorder?  The psychiatrist managing the Shy Bipolar's case believed that the shyness was the result of the onset of the bipolar disorder; had the disorder not interfered with the adolescent development of this man, who was normally outgoing before its onset, he would probably have been more outgoing.  Consequently, the therapist reasoned, the "extended benefit" should be given.  Had the shyness not been "diagnosed" as the result of the bipolar disorder, then even if it were comparably serious, there would have been no eligibility for an extended benefit. 

          The factor underlying this reasoning did not have to do with the degree of suffering involved in being shy; the reasoning depended on the etiology or explanation of the shyness.  The point is illustrated by another case in which clinicians distinguish between treatment of illness and enhancement of well-being.  An intelligent, professionally successful married father of two children sought treatment because of severe unhappiness associated with marital distress.  His wife suffered from a serious mental illness that made her very difficult to live with.  The Unhappy Husband was committed to maintaining the marriage.  A V code diagnosis ["Conditions not attributable to a mental disorder that are a focus of treatment" (Diagnostic and Statistical Manual III-R:359)] (marital problem) was made.  In 26 highly productive sessions of psychotherapy, the man was able to clarify some of the pertinent dynamic issues in his marriage, and developed a number of adaptive strategies for lessening his distress.  The patient wished that his treatment would be covered by insurance, but he agreed that he was not suffering from an illness and that it was fair to expect him to pay.

          The Unhappy Husband was probably suffering more than many of the HMO members being treated for illnesses, and psychotherapy definitely enhanced his well-being.  What possible rationale could there be for not covering his treatment?  The clinician's decision hinged on the question of what the Unhappy Husband is suffering from.  By the criteria set forth in DSM-III-R, the man did not have an illness.  His suffering arose from the fact that although his wife's unchanging condition caused him great pain, his values precluded divorce.  The clinician believed that under the prevailing agreements that govern insurance, individuals like the Unhappy Husband should be responsible for some or all of the cost of ameliorating the unhappiness associated with an unfortunate existential situation.  Paradoxically, if the Unhappy Husband expressed his suffering through somatic symptoms, and presented to an internist rather than a mental health clinician, insurance would typically cover medical investigation and treatment, which would probably be less effective but costlier than psychotherapy.  A 1989 survey of medium and large firms showed that only 2 percent of insured employees have coverage for outpatient mental health services equivalent to other medical services (Scheidemandel 1993:44).

 

Treatment/Enhancement and Moral Hazard

Some clinicians and some members of the public balk at the line being drawn here.  They may be inclined to say that if there is "suffering" involved, as there clearly might be for short children, shy adults, or husbands opposed to divorce from ill wives, then we should relieve the suffering with medical interventions funded through insurance.  Nevertheless, there is a very good reason why insurers prefer to insist on a diagnosis of disease or impairment as an eligibility condition for reimbursement for beneficial services, and why they do not simply agree to reimburse anything that is effective at producing a benefit, at least as perceived by the patient or even the therapist.  Without the requirement for a disease diagnosis, insurers would be exposed to what is termed "moral hazard."

          Moral hazard refers to the modification of behavior that individuals make in light of the incentives provided by insurance coverage--in particular, behavioral changes that make them eligible for benefits they would not otherwise be entitled to have.  For example, someone with extensive fire insurance might seek to make a payoff more likely by setting a fire (here the moral hazard leads to arson and fraud) or by failing to take reasonable precautions against one.  Obviously, insurers do not reimburse people for fire damage that is the result of arson the insuree arranges or to gross negligence.  Similarly, there is no insurance market for reimbursement for the costs of speeding tickets.

          If individuals could define their otherwise normal condition as one that involved "suffering" or one that imposed unacceptable disadvantage, given their expectations, then insurance against such suffering or disadvantage would encourage extensive moral hazard.  An insurance market against certain risks can function only if the risks are measurable actuarially and the market does not create conditions (such as moral hazard) that make the risk unmeasurable.

 

Treatments and the Limits of Obligations

This point about insurance is related to a deeper fact about when we feel obligated to assist others, including when we feel obligated to reduce or mitigate the effects of an inequality that arises among us.  Consider the case of the Plain Hero who feels very dissatisfied with his appearance: his face is normal but hardly handsome.  He feels he might be more successful in seeking companionship or in "presenting" himself in business relationships if his face or hair better matched some social model of handsomeness.  He may have developed elaborate explanations for his failures that excuse himself of any responsibility and place the blame on his appearance and the "superficiality" of others so affected by it.  The solution does not lie in changing how he thinks or behaves with prospective social or business partners but in how he appears.  Are we obliged to relieve his suffering by providing him with the means to obtain cosmetic surgey?

          Some may feel so obliged, but most would not.  They would complain that the problem here lies in the beliefs, attitudes, and excuses harbored by our Plain Hero.  It is his responsibility to rethink his goals and his means of achieving them.  If he is unable to do so, it may indicate some deeper psychological problem, and the treatment he may need is a mental health intervention, not cosmetic surgery.  In part, what we resist here is the idea that an individual can develop very expensive tastes or preferences, for example for being one of "the beautiful people," and that others owe him the chance to satisfy those preferences.  We resist being held hostage in our obligations to assist others (or to reduce inequality) by expensive tastes.  If the Plain Hero wants to invest his own resources in removing what he sees as the obstacle to his success, then let him.  We owe him a new face no more than we owe him a Porsche, which he might just as justifiably think would open new doors to him.

          The Plain Hero, of course, is to be distinguished from someone who has been disfigured by congenital deformity, disease, or trauma, for whom reconstructive plastic surgery meets a medical need (Daniels 1985:31n9; MacGreggor 1979; de Beaufort, et al 1996).  Obviously, there will be gray areas in which it is unclear whether plastic surgery meets a medical need or simply a cosmetic preference. 

          This concern about social hijacking by extravagant preferences cannot be all there is to the matter.  The Unhappy Husband in the example discussed earlier has not adopted extravagant tastes.  His aversion to abandoning his ill wife may be the result of some unshakeable moral conviction, perhaps one inculcated in his religious upbringing, or it may be the result of a moral conviction he affirms and takes responsibility for--one that is in fact admirable, as loyalty often is, despite its consequences for him.  Still, in general we do not owe it to people to compensate them for all sacrifice and suffering they incur when they live up to what they see as their obligations, though sometimes--for example, with veterans--we may think compensation is appropriate.  We are often unhappy in carrying out our moral duties, yet we do not generally think that others owe us something for doing so--that is, other than praise or recognition or moral support.  We no doubt owe moral support to the Unhappy Husband in a way we do not owe such support to the Plain Hero.

          As a result of this discussion, we might conclude that the treatment/enhancement distinction derives some support from the general fact that disease and impairment are conditions that we are generally not responsible for (leaving aside the issue of self-induced disease, for the moment).[1]  In addition, they are conditions that we can generally agree involve some sort of objectively specifiable burden or harm.  For example, the harm might be an impairment of the range of opportunities open to us (see Daniels 1985) because of the reduced functioning or diminished capabilities that result from the disease or impairment.  We might also think the "pain and suffering" involved as a result of these conditions can be recognized as typical features of the human condition. In contrast, we may want to dismiss the pain of the Plain Hero as an "exaggerated" and quite atypical response to the human condition, saying "There need have been no real suffering there, only a change of his attitude."

 

Hard Cases and the Expansion of Obligations

Unfortunately, if we look more closely at certain difficult cases, we are more hard pressed to attribute to the treatment/enhancement distinction the weight it is given  medical practice, including insurance schemes.  For the sake of vividness, let us put names on the faces of the growth hormone treatment cases.

                   Johnny is a short 11-year-old boy with documented GH (Growth Hormone) deficiency resulting from a brain tumor.  His parents are of average height.  His predicted adult height without GH treatment is approximately 160 cm (5 feet 3 inches).

                   Billy is a short 11-year-old boy with normal GH secretion according to current testing methods.  However, his parents are extremely short, and he has a predicted adult height of 160 cm (5 feet 3 inches) (Allen and Fost 1990:117).

          These cases make the distinction seem arbitrary for several reasons.  First, Johnny and Billy will suffer disadvantage equally if they are not treated.  There is no reason to think the difference in the underlying causes of their shortness will lead people treat them in ways that make one happier or more advantaged than the other.  Second, although Johnny is short because of dysfunction whereas Billy is short because of his (normal) genotype, both are short through no choice or fault of their own.  The shortness is in both cases the result of a biological, "natural lottery."  Both thus seem to suffer undeserved disadvantages.  Third, Billy's preference for greater height, just like Johnny's, is a preference that most people hold; it is not peculiar, idiosyncratic, or extravagant.  Indeed, it is a response to a social prejudice, "heightism."  The prejudice is what we should condemn, not the fact that they both form an "expensive taste" in reaction to it.

          If we return to the case of the Shy Bipolar, we could raise exactly the same points in comparing him to an equally shy but otherwise normal person, the Shy Normal.  They will suffer the disadvantages of shyness equally.  Both are shy through no fault of their own--assuming normal shyness is a feature that is significantly determined by temperament or by exposure to early learning situations that a person did not choose to be in.  And most people would prefer to be more outgoing and to enjoy the relationships we think come with such a posture toward others--the preference to change from being shy is not idiosyncratic or extravagant.

          Cases like these raise several questions:  Does the concept of disease underlying the treatment/enhancement distinction force us to treat relevantly similar cases in dissimilar ways?  Are we violating the old Aristotelian requirement that justice requires treating like cases similarly?  Is dissimilar treatment unfair or unjust?  Any defense of the moral use to which we put the treatment/enhancement distinction in medical and insurance contexts must respond to this concern.  These cases make more concrete the worries raised in Chapter Three that there is something "morally arbitrary" about addressing the disadvantages produced by disease and impairment and not addressing those imposed by disadvantageous--but normal--allotments of capabilities or talents and skills.

 

The Microstructure of the Normal, and Moral Arbitrariness

Before responding to these questions, we would like to deepen the sense that there may be something morally arbitrary about the use to which the treatment/enhancement distinction is put, and perhaps even about the distinction itself.  To do so we appeal, at least hypothetically, to something we may learn from the Human Genome Project and from the greater knowledge we get about how genes regulate growth.

          Suppose we learn that some particular pattern of genes explains the extreme shortness of Billy, the child who did not seem to be growth-hormone-deficient.  Suppose we learn that some particular genes Billy has make some receptors to growth hormones slightly less responsive than the genes that would lead someone to be of average or above-average height; perhaps there are fewer such receptors, or perhaps they shut down earlier than in those whose genotypes generally make them taller, or perhaps they slow down production of growth hormones sooner.  We learn, that is, just which "losing numbers" in the natural lottery placed Billy in the bottom few percent of the normal distribution for height.  Suppose, further, that we also identify a gene that disposes Johnny to develop the brain tumor that caused his growth hormone deficiency.  We now have traced both Johnny and Billy's shortness back to specific genes.  Billy's genes work directly to make him short; Johnny's work indirectly to do so, through causing a tumor that disrupts hormone production.  Why does having one set of genes give Johnny a claim on social resources necessary for growth hormone treatment but Billy no such claim?

          Of course, this story really adds nothing new.  We already knew that Johnny and Billy's troubles were rooted in their biology.  Adding the genetic details only makes things seem more vivid.  Still, if we can identify the specific genes that contribute to Billy's shortness, we may be more tempted to think of them as "bad" genes: they lead to Billy's unhappiness or disadvantage in a "heightist" world.  We may be more tempted to think of them very much on the model of genetic defects or diseases, especially if they work through mechanisms that have some analogy to pathological defects.  We will be tempted, that is, to medicalize what we have hitherto considered normal.

          There may be an interesting analogy here to the differentiation into "learning disabilities" of what had earlier been thought of as the "not so bright" end of the school performance trait.  In neuropsychology, students whose performances are at variance with their measured intelligence and whose performance discrepancies are not explained by poor teaching are considered likely to have some specific learning disability.  The general working hypothesis is that there is a specific information processing problem or deficit--a departure from or impairment of normal information processing--that probably has some neurological basis.[2]

          The analogy is to our finding specific growth hormone deficiencies in a person who is otherwise constituted (genotypically) to be taller (in a normal range of environments).  In the case of learning disabilities, we disentangle people who were simply grouped as "dull or ineffective students" at the low end of a "normal distribution" of school performance into those with specific disabilities and those who just remain the unanalyzed "dull" students.  What happens, however, if we find out that being taller or normally intelligent is nothing more than having more of (an appropriate set of) the relevant microstructures/processes? Someone who is very short or dull is then missing more of them.  Why is this not seen as just as much a "defect" as having a learning disability or growth hormone deficiency?

          The hard cases thus pose this question: What justifies us treating the normal but "bad" or disadvantageous genes differently from genes that lead to growth hormone deficiency or to receptor insensitivity to growth hormone (or to learning disabilities)?  If we can remedy the effects of these genes with growth hormone treatment or other treatments, including genetic tampering, we might think it quite arbitrary to maintain the treatment/enhancement distinction.

 

Two Objections to the Treatment/Enhancement Distinction

The hard cases we have been considering, especially in light of the speculation about what we might learn from the Human Genome Project and related genetic research, really raise two quite distinct kinds of objections to the treatment/enhancement distinction.  One is that the distinction, even assuming we can draw a persuasive line between the treatment of disease or impairment and the enhancement of otherwise normal traits, does not have the moral import that is commonly attributed to it--for example, in our insurance practices.  Some nondisease conditions seem to oblige us to provide assistance to people for the very kinds of reasons that some diseases or impairments do.  If so, the treatment/enhancement distinction does not map onto the boundary between morally obligatory and nonobligatory services, as the defender of our medical insurance practices might have hoped.

          The second objection challenges the basis on which the treatment/enhancement distinction is itself drawn.  By implication, this objection then challenges whether we can use the treatement/enhancement distinction to draw further moral distinctions without some kind of circularity.  On this view, it is not because there is something biologically distinctive about Johnny's condition as opposed to Billy's that led us to describe Johnny as having a disease and Billy not (although Johnny does have a tumor and Billy does not). Rather, our "social construction" of disease draws on a set of values that happens to have singled out Johnny rather than Billy in this way.  But if we come to see that the same value that leads us to consider Johnny's tumor as a disease condition (suppose it is the concern we have to assist people whose conditions put them at a certain kind of disadvantage through no fault of their own) also applies to Billy's condition, then we should reconstruct our view of disease to include Billy's condition.

          According to this line of thinking, it is our norms and values that define what counts as disease, not merely biologically based characteristics of persons, and the arbitrariness in these hard cases comes from inconsistently applying our values.  Pointing to the line between treatment and enhancement is not, then, pointing to a biologically drawn line; rather, it is an indirect way of referring to valuations we make.  We cannot point to such a line as the grounds or basis for drawing moral boundaries since we are only pointing to a value-laden boundary we have constructed.

          This objection echoes a worry we expressed in commenting on the positive/negative eugenics distinction: judgments about eugenicists made about "defects" reflected value judgments about what counted as normal or superior traits.  Aimed at the treatment/enhancement distinction more generally, the objection is that we are being offered an apparently "natural" baseline between disease (and impairment) and the biologically normal, when there really is none.  The effect is that, disingenuously or not, we disguise hidden moral judgments that really form the basis of the moral boundary we purport to derive.

          Are there reasonable replies to this objection?  Can the treatment/enhancement distinction justifiably do at least a significant portion of the work we commonly rely on it to do?

 

III.  A Limited Defense of the Treatment/Enhancement Distinction and Its Circumscribed Use

Treatment/Enhancement and the Obligatory/Nonobligatory Boundary

No reasonable defense of the treatment/enhancement distinction is possible if we expect too much of it.  Specifically, we should not expect that distinction to translate without qualifications into the boundary between obligatory and nonobligatory services, even if it justifiably plays an important role in medical insurance coverage decisions.  There are good reasons why we are not obliged to provide all and only treatments as oppposed to enhancements.  For the sake of argument in much of this section, we shall assume we can draw a plausible line between the treatment of disease or impairment and the enhancement of otherwise normal traits, and we shall revisit the assumption at an appropriate point.

          There are two basic reasons why the treatment/enhancement distinction does not coincide with the boundary between obligatory and nonobligatory services.  First, resources will be too limited to meet all our needs for the treatment of disease or impairment.  Justice then requires that we meet the most important needs first, leaving people to fend for themselves in meeting less important medical needs.  In other words, the class of beneficial treatments is broader than the class of services we are obliged to provide, given reasonable resource constraints.  Being a treatment is thus not a sufficient condition for our being obliged to provide a service to people.  Still, we might believe that being a reasonably effective treatment for a disease or impairment is still a necessary condition, an eligibility condition, for something being included in an insurance package or being thought of as a service we are obliged to provide.

          The second reason for limiting the role of appeal to the treatment/enhancement distinction also rules out the unqualified claim that it provides a boundary between the obligatory and the nonobligatory.  Society may--indeed does--have certain moral or legal obligations to offer medical services that do not involve the treatment of disease.  For example, we would argue (were this the occasion) that society's obligations to respect the equality of women compel it to make abortion a covered service in a national benefit package, just as it is already a covered service in most existing private insurance in the United States.  But the reason for including it has nothing to do with treating a disease or impairment, since an unwanted pregnancy is not a disease or impairment but rather the result of normal functioning.  (President Clinton's proposed Health Security Act [1994] disguised the issue by including nontherapeutic abortions as "pregnancy related services.")

          Indeed, the reasons many have for excluding abortion also have nothing to do with the distinction between treatment and enhancement: some people are opposed to permitting abortions even when continued pregnancy involves a threat to the health or life of the mother and is therefore "therapeutic" or "medically necessary" abortion.  If we are right that nontherapeutic abortion services should be included in standard benefit packages, because of concerns about the equality of women, then treatment of disease and impairment does not capture the class of services society is obliged to provide once we consider all of our obligations.  As we shall see in what follows, sometimes concerns about equal opportunity, whether construed more narrowly, as in this chapter, or more expansively, as in the brute luck view described in Chapter Three, may oblige us to provide some genetic interventions even when they are not treatments of disease.

 

The Primary Rationale for Medical Obligations

It may still be the case that the primary rationale for claiming that society is obligated to provide people with a medical service is that it meets an important need for the treatment of disease or impairment.[3]  This may be the reason people typically agree on and justifiably cite when they think about the moral importance of health care services.  If there is a plausible defense of the treatment/enhancement distinction, it will be in the limited role pointed to here:  Our primary justification for considering a health care service to be something society is obliged to offer people is that it is a reasonably effective treatment for a disease or impairment (and resource constraints permit treating this condition).  Other reasons may broaden societal obligations, but the primary justification gives us the core.

          This limited use of the treatment/enhancement distinction is elaborated in Daniels's (1985) account of justice and health care, as described in Chapter Three.  Disease and impairment, both physical and mental, are construed as adverse departures from or impairments of species-typical normal functional organization or "normal functioning," for short (see endnote 2).  The biomedical sciences for humans, like the veterinary sciences for animals, study both the variation in the functional organization typical for our species and the departures from normal functioning that we call disease and impairment (Boorse 1975, 1976, 1977; Kitcher 1995).[4]  The line between disease and impairment and normal functioning is thus drawn in the relatively objective and nonevaluative context provided by the biomedical sciences, broadly construed.  What counts as a disease or impairment from the perspective of these sciences is largely free from controversy in the broad range of cases.

          Of course, sometimes value judgments, including prejudices, as well as errors intrude, and we get examples of conditions or behaviors that are improperly classified as disease or impairment, such as the disease of masturbation (Engelhardt 1974) or homosexuality (Bayer 1981).  But just as whales are not fishes, though they were long classified as such, so too these conditions are not diseases,[5] even if complex social conditions and attitudes contributed to their being viewed as such. 

          We are not, however, just interested in categorizing disease and impairment.  Rather, we have an important interest in their effects, since they often cause pain and suffering, shorten life, and quite generally impair in varying degrees the range of opportunities open to us.  On Daniels's view, the central moral importance, for purposes of justice, of treating disease and impairment with effective health care services (construed broadly to include public health and environmental measures, as well as personal medical services) derives from the way that protecting normal functioning contributes to protecting opportunity.  Specifically, by keeping people close to normal functioning, health care preserves for people the ability to participate in political, social, and economic life.  It sustains them as fully participating citizens, as "normal competitors" in all spheres of social life.

          By maintaining normal functioning, health care protects an individual's fair share of the normal range of opportunities (or plans of life) reasonable people would choose in a given society.  That individual fair share, however, is defined by reference to the individual's talents and skills, suitably protected against mis- or underdevelopment as a result of unfair social practices.  Accordingly, a principle assuring fair equality of opportunity should be extended to govern the design of health care systems.  (As we saw in Chapter Three, Rawls [1971] simplifies his theory by assuming all are fully functional; Rawls [1993] endorses Daniels's approach.)

          By keeping people functioning as close to normally as possible, within resource limits, we discharge our obligations to protect (a suitably extended principle of) fair equality of opportunity.  Daniels's extension of "fair" equality of opportunity to health care broadens the level playing field to include socially correctible departures from normal functioning.  In doing so, it corrects both for some natural and some socially induced disadvantages.[6]  His account, however, stops short of levelling the field further to include the redistribution of otherwise normal but competitively disadvantageous capabilities (as the "brute luck" view does).  We return to consider arguments in favor of this stopping point in the next few sections, after adding an important detail to this account.

          The relative moral importance of treating different diseases and impairments can in part be judged by reference to their impact on the range of opportunities open to us.  Because this range of opportunities is itself socially relative, being affected by technology, education, wealth, and other cultural factors, judgments about the relative importance of treating different diseases and impairments will have some social variability.  (See our discussion in Chapter Seven on the morality of inclusion as it applies to disabilities.)  For example, dyslexia is a cognitive impairment in any society, but it is disability and hence important to treat only in literate societies (Daniels 1985).  Within a society, relative to its normal range of opportunities, some diseases and impairments are more important to treat than others, and this will affect our decisions about which treatments to offer when we cannot provide all the ones people need. 

          The appeal to a principle assuring fair equality of opportunity is an attempt to explain why we attribute special moral importance to treating disease and disability.  If the particular interpretation of equal opportunity is acceptable, it explains the primary rationale for the provision of health care services.  Aiming to maintain normal functioning makes a limited, but crucial, contribution to protecting fair equality of opportunity.[7]  It leaves considerable room for social relativity about the importance of some treatments compared with others, but much less about what counts as a disease.  Still, it is important to keep in mind that the treatment/enhancement distinction does not specify the boundary between obligatory and nonobligatory medical services.  Some obligations derive from considerations beyond the primary rationale, and the primary rationale includes a respect for reasonable resource constraints.

 

Hard Cases and Expansive Views of Medical Obligations

If we return to the hard cases we considered in the last section, we see that we are pulled away from the primary rationale in two directions.  In both the growth hormone (Johnny and Billy) and Shy Bipolar cases, we were concerned that people who suffered equal disadvantage from being short or shy were not being treated the same way.  If the therapy could be counted as treating a disease (growth hormone deficiency in Johnny's case, or the effects of bipolar condition on personality development), then reimbursement for the therapy was assured.  But if the therapy counted as enhancement of an otherwise normal condition (shortness for Billy, or shyness for an otherwise normal person), then reimbursement was not available.

          According to the fair equality of opportunity account of justice and health care (that is, the "social structural" view), we are concerned about disease and impairment because of their impact on opportunity.  But here Billy suffers as much loss of opportunity as Johnny; so too does the Normal Shy person as compared to the Shy Bipolar.  We must face this crucial question: Why should we put so much emphasis on the distinction between treatment and enhancement rather than calculate the effect on opportunity directly?  The pull here is to equalize capabilities, or at least to reduce disadvantages that result from less-than-equal capabilities, regardless of the role of disease or impairment.  This pull thus concretely reflects the instability noted in Chapter Three regarding positions that pursue only partially the level playing field interpretation of equal opportunity.  The instability seems to imply that we should either agressively and completely pursue the level playing field strategy by moving toward a brute luck or equal resources view, abandoning such partial approximations as the treatment/enhancement distinction, or we should abandon the distinction altogether.

          The other pull is visible in the case of the Unhappy Husband who is clearly unhappy and finds therapy effective.  Moreover, he is not unhappy because he has cultivated exotic tastes-- indeed, we think of his compunctions about abandoning his wife as admirable (although we do not ordinarily think we should compensate people for any sacrifices they make in order to meet their moral commitments).  He has not in any obvious sense "chosen" to adopt idiosyncratic or selfish or self-serving attitudes or preferences that are the source of his unhappiness.  (One qualification is needed here: His religious or moral compunctions about divorce and abandonment of his sick wife may be the result of early childrearing, but we think of these as values that are reaffirmed--and thus "chosen" when we are adults.)  Why should such effective therapy not be reimburseable? Some clinicians--call them "expansive" clinicians--think that such a person should be eligible for reimbursed treatment.  They think that health care should have the goal of removing sources of unhappiness from which we suffer through no fault or choice of our own.  Health care should give people an opportunity to be happy that is just like the opportunity enjoyed by others.

          The three positions described here--the primary rationale and the two pulls from other directions--reflect three distinct interpretations of our egalitarian concerns that have been developed in the philosophical literature.  More specifically, each can be read as a different gloss on the scope of our concerns about equality of opportunity.  If we think that concerns about equal opportunity should guide the design of a health care system, then each leads us to a different view of our obligations to assist others through health care services, including genetic interventions.  The primary rationale retains an appeal to the treatment/enhancement distinction, but the other two positions abandon it.  Each needs further explanation, and ultimately we shall have to decide whether the alternative positions give us sufficient reason to abandon or modify the primary rationale.

 

Three Philosophical Models of The Relationship Between Equal Opportunity and the Goals of Health Care

The Normal Function Model

The primary rationale appealed to by Daniels rests on what we shall call a "normal functioning" interpretation of the requirements of what was referred to in Chapter Three as the social structural view, which Rawls calls fair equality of opportunity (Rawls 1971).

          Historically, our understanding of the requirements of equality of opportunity has evolved, as noted in Chapter Three.  We have come to oppose allowing certain human traits--originally race, religion, ethnicity, and class origin; later gender, age, disability, and sexual orientation--to serve as the basis for assigning people to jobs or offices.  Rather, these traits are seen as "morally irrelevant," and we believe people should be judged by their capabilities to perform in jobs, offices, or educational settings.  (This is the "nondiscrimination"  conception of equal opportunity described in Chapter Three).

          But we also recognize that past unjust social practices may have distorted the development of peoples' talents and skills, and that we may have to compensate people for the effects of those practices--for example, by special programs aimed at correcting for those distorting effects.  Otherwise, expecting people to compete on the basis of the talents and skills they actually have may be expecting them to compete on an unfair basis.  This was the idea behind the federal program Operation Head Start, one of the most successful compensatory education programs attempted in the United States, and, more generally, it is the idea behind universal public education.

          Whereas the nondiscrimination view of equal opportunity simply requires us to eliminate reference to morally irrelevant traits in determining access to desirable social positions, "fair" equality of opportunity (the "social structural" version of the level playing field view) requires us to correct where we can for the mis- or underdevelopment of talents and skills--that is, for the effects of the social lottery, at least where these are influenced by past injustices. 

          The normal functioning interpretation of the requirements of equality of opportunity--whether in Rawls's (1971, 1993) general account of distributive justice or in Daniels's (1985) extension of it to health care--assumes that there is a background inequality in the distribution of capabilities, an effect of the natural lottery.  Equal opportunity then does not require assuring truly equal chances of success, which could result only if we eliminated this inequality in the distribution of capabilities.  The levelling of the playing field goes only so far, on the normal functioning view.

          Applied to health care and construed as an account of the goals of health care, the normal functioning interpretation of the fair equality of opportunity principle thus ascribes to health care the relatively modest and limited task of keeping people functioning as close to normally as possible.  In effect, health care, like compensatory education programs, aims to produce "normal competitors."  These are not equal competitors; quite generally, some will suffer the disadvantage that comes from some normal but not optimal or even average capabilities.  An unequal distribution of capabilities is left intact, once the distorting effects of past social practices and treatable disease and impairment are addressed.

          Why should we take the natural distribution of talents and skills as a baseline, as the normal functioning view does?  If we can redistribute or modify some of those disadvantaging talents and skills, why not alter the baseline?  This was the key question raised in Chapter Three and we see it echoed in the pull of the hard cases.  If medical technology--whether genetic or not--allows us to redefine the baseline and produce more equal chances of success, are not we committed to doing so wherever we can if we believe in levelling the playing field?

          In Chapter Three we noted some reasons for levelling the field more completely.  Here we develop further some reasons for abiding by the normal functioning (or "social structural") view.  As noted earlier, these views are farther apart in theory than in practice, but for the moment we want to clarify further the theoretical issues.

          A fundamental point to note is that our egalitarian concerns in general, and our concerns about equal opportunity in particular, form only part of our concerns about what justice requires.  A theory of justice in general, or of justice for health care in particular, must combine concerns about equality with those about liberty.  And both these must be reconciled with considerations about efficiency and the allocation of resources.  Even if the fundamental intuition underlying our concerns about equality of opportunity pushed us toward thinking that we were obliged to take some steps to redistribute capabilities such as talents and skills, rather than treating their "natural" distribution as a baseline, we must reconcile the pull of that concern with conflicting goals regarding liberty and efficiency.  The presumption in favor of modifying the baseline, coming from the egalitarian pull of a concern about equality in opportunity, can be defeated by other key components of our concerns about justice. If, for example, we were only concerned about equality of opportunity, we might be indifferent between "levelling down" by reducing the greater capabilities of the better off and "levelling up" by improving the capabilities of the worst off. But considerations of both liberty and efficiency rule out levelling down.

          In Rawls's (1971) theory, this reconciliation of equality with liberty and efficiency takes place through the choice of principles that deliberators would make in the Original Position--Rawls's social contract situation.  Suppose that contractors knew that it was sometimes possible to alter the natural distribution of talents and skills and that doing so might make it possible to better promote equality of opportunity.  They would still have to solve the more general problem of distributive justice posed by the fact that, in general, some unequal distribution of talents and skills can and must be taken as a baseline.

          For example, Rawls is quite explicit that environmental factors, including culture, family influence, and individual responsiveness to educational and compensatory educational measures, will unavoidably lead to some ineliminable inequality in the distribution of talents and skills.  In the general case, it may be better for deliberators, even for those who anticipate they may turn out to be worse off with regard to marketable talents and skills, to mitigate the effects of inequalities by redistributions of other important goods than to insist on what may turn out to be a highly inefficient "equalizing" of the distribution of natural talents and skills (or even a more modest elimination of obviously disadvantaging traits). And this general case is what yields Rawls's integration of efficiency and equality concerns through a division of labor between principles.  The Difference Principle, which allows inequalities only if they maximally benefit the worst off, provides maximal mitigation of the consequences of the natural lottery, at least in the general case. Insisting quite generally on more direct and radical forms of seeking equality through modifying traits might in fact make those seeking modification worse off than they would otherwise be.  Rawls assumes that deliberators in his Original Position would make just such a reconciliation of competing concerns, requiring that the system as a whole can be made to work to the advantage even of those worst off with regard to marketable talents and skills. In specific instances, however, where we can identify a highly efficient intervention to eliminate traits that are obviously disadvantaging, then there is nothing in the the theory to block this course of action, and much to support it, especially since it is may be clearly superior in all ways to mere mitigation.[8]

          Interpreted in this way, there is no reason to think that Rawls's account, or Daniels's extension of it to health care, would rule out sometimes being obliged to use genetic technologies to alter the distribution of talents and skills.  The Rawlsian reconciliation between equality and efficiency, even if it captures the general case, will not justify treating the natural baseline as if it is an uncrossable boundary.  In some special cases, where there might be a particularly good likelihood of inexpensively and safely reducing clear disadvantages, there may well be adequate reason to go beyond our standard notion of equal opportunity to permit some enhancement in the name of eliminating obvious disadvantages.

          Even with such case-by-case exceptions, however, the normal functioning conception of equal opportunity retains a central feature of the conception of equal opportunity that is part of our public culture--namely, that not all unchosen competitive disadvantages are unfair and require elimination or compensation.  As standardly conceived, we do not think competition is automatically unfair--or that opportunities are automatically unequal--just because some people are naturally endowed with talents or skills that others cannot match.  The normal functioning view of equal opportunity, even with the exceptional extensions allowed here, retains the core idea that has longstanding in our democratic culture--namely, that a competition for jobs or offices is fair if it tests people for their possession of the relevant capabilities, provided society has not unfairly distorted them.  (We return to this point about democratic culture in a later section of this chapter.)

          This point about fair competition draws support from other contexts as well.  In athletic competitions, we may sometimes set up categories, such as weight ranges in boxing or wrestling or gender classifications in many sports, to recognize some obvious sources of biological difference that might make competition unfair.  We recognize, however, that some people are naturally faster or stronger in ways that no training regimen can correct for, and we do not view such competition as intrinsically unfair.  In any case, what is made unlikely by Rawls's account of fair equality of opportunity or by Daniels's normal functioning account is that an individual who finds himself or herself at a competitive disadvantage because of an otherwise normal capability thereby has a prima facie claim, based on equality of opportunity, to assistance to rectify that (perceived) deficit.[9]     In what follows, we try to clarify this point by examining two alternatives to the normal functioning view.  In Chapter Three, we considered a much more demanding and expansive interpretation of the requirement of equality of opportunity--at least in theory--than the normal functioning account.  To explore that approach more thorougly, we examine two variations that appear in the philosophical literature, both of which abandon the treatment/enhancement distinction.  The "equal opportunity for welfare" view explicitly appeals to a principle similar to the "brute luck" view, calling for compensation whenever a disadvantage or loss of opportunity for happiness comes about through no individual fault.  The "equal capabilities view" actually appeals to a different philosophical idea, the notion of positive freedom--that is, the freedom to do or be whatever we want.  We begin with the equal capabilities view.

 

The Equal Capabilities Model

In a series of articles and books, Sen (1980, 1990, 1992) argues that the object of our egalitarian concerns is equality in what we can do or be.[10]  Think of all the things we can do or be as forming a complex set of our actual capabilities.  (Sen talks of an "n-tuple of doings and beings" as forming our "capability sets.")  To the extent that we are concerned about equality, we should think not simply about the resources we have available to us, but our ability to transform those resources into actual capabilities, since variations in individuals will lead to different capabilities for the same inputs of resources.  (On Sen's view, as on Rawls's, we are also not concerned about producing experiential states, like happiness or pleasure.)  Sen views this account as an explication of the idea of "positive freedom," but it is not implausible to view it as an account of equality of opportunity.  We have equality of opportunity when our capability sets are equal.  (If capabilities are not equal because some people have developed certain ones rather than others they could have developed, we may ignore that inequality; we will simply talk about "capabilities" in what follows.[11])

          If we could simply translate this claim about equality of opportunity into an account of the goals of health care--which we shall argue we cannot--then those goals would be dramatically expanded from the limits set by the standard rationale discussed earlier.  Health care would now have as its task the goal of reconstructing people in ways that make their capabilities more equal.  With this expansion, there would simply be no point in drawing a line between treatments and enhancements.  Society would be just as much obliged to enhance the capabilities of those who function normally but with less-than-equal capabilities as to keep people functioning as close to normally as possible.  (One perhaps disturbing wrinkle in this approach is that we may not be under an obligation to correct for the effects of disease and capability where they work to increase equality in capabilities--for example, by diminishing the capabilities of those endowed with superior capabilities.)

          To see why we cannot so directly use the equal capabilities approach to expand the goals of health care, we must examine Sen's account more carefully.  A crucial point is one already made: a theory of justice requires integrating concerns for equality with concerns for liberty and efficiency.  Sen's claim that our egalitarian concerns really focus on capabilities, not resources or experiential states, or the claim that we explicate the goal of equal opportunity as the goal of achieving equality in capability sets, does not tell us what justice requires us to do.  Sen (1992) comments that we must reconcile our concerns about efficiency with our concerns about equality in order to find out what justice requires.  In other words, justice might not require us to pursue equality of capabilities so directly after all, if the cost in terms of efficiency were too great.  We might instead be required to permit some inequalities and act to mitigate their effects.  Sen does not discuss how this reconciliation of justice and efficiency would take place in a theory of justice.

          Rawls, as we have argued, does attempt a particular reconciliation: we should take some natural distribution of talents and skills as a baseline (generally, this is the normal distribution).  Although those with the least marketable capabilities will have lower prospects in life than those with more marketable capabilities, Rawls mitigates the effects of this basic, residual inequality by requiring that inequalities in primary social goods like wealth and income be constrained so that they work to the advantage of those with the worst prospects in life.  In this way, those with more marketable talents and skills must harness their advantages to maximizing the prospects of those who are worst off with regard to talents and skills.  In effect, Rawls divides responsibility for meeting our egalitarian concerns between two different principles of justice.  The principle governing equality of opportunity leaves the normal distribution of capabilities in place, but the principle governing overall inequality in prospects in life mitigates the effects of doing so.

          If health care should be governed by a principle governing fair equality of opportunity, then, for the general case, it too may leave the normal distribution of capabilities in place, concerning itself only with keeping people functioning as close to normally as possible.  It would then be necessary to rely on other principles of justice governing inequalities in life prospects to mitigate the effects of this pragmatic decision.  The fact that Rawls appeals to the "moral arbitrariness" of the natural lottery for capabilities does not mean that the only reasonable way to address this problem within a comprehensive theory is to devote extensive resources toward equalizing capabilities.  It may be that we can do better, even by those worst off with regard to capabilities, by leaving the distribution of capabilities mostly in place and mitigating the effects of doing so in other ways--at least that is his rationale.

          This dramatic restriction on the scope of what we can pursue in the name of equal opportunity--as compared to Sen's account--may not be what Sen has in mind, but then we need some clear idea of what restrictions are compatible with the overall demands of justice.  (The reader is also reminded that Rawls's rationale for the general case does not preclude a more restrictive, case-by-case assessment of claims that eliminating some obviously disadvantaging [but normal] traits is justifiable on grounds that modestly extend the concept of equal opportunity.)

          Even leaving aside the competing claims of liberty, efficiency, and equality, the equal capabilities model does not strictly speaking involve a pursuit of equal capability sets.  Sen offers an approach to ranking differences in capabilities.  How important a particular capability is will depend on the system of values--the plan of life or conception of the good--adopted by an individual.  John may rank capability set A as better than capability set B, but Jane may make the opposite judgment from her conception of the good.  We may find some cases in which all can agree that set C is worse than sets A and B, but we may get no rankings for a broad range of capability sets.

          In fact, we are most likely to find that the clear-cut cases in which a set (say C) is ranked lower than others will be cases in which there is a significant departure from normal functioning--a disease or impairment that has a significant impact on capabilities and thus on opportunities.  In those cases, Sen's account will tend to agree with the standard model for thinking about our obligations to assist others with medical interventions, including genetic ones.  But for a broad range of differences in capability sets, there may be "incommensurability" in the sense that these sets are ranked differently by people with different conceptions of what is good in life.  Because of this, our commitment to pursuing equality of capabilities is seriously limited, since for a substantial range of capabilities, there is no common basis for determining what increase the equality of those sets.

          There is a biological point that bears on this incommensurability and on the treatment/enhancement distinction more generally.[12]  Consider the accompanying figure, which reports on the results of an experiment testing how different genotypes from natural populations survive in a variety of environments that vary in temperature.

 

                                [insert figure from Lewontin's comments here]

 

          The same pattern is exhibited for other genotypes in other kinds of environments, since what is portrayed here is a very general fact of nature.  In general, genotypes fall into two types: one group is poor at surviving in a broad range of environments, while the other is in the normal range but varies widely in survivorship depending on environments.  No genotypes emerge as unconditionally advantageous.  Within those whose survivorship puts them in the normal range, however, advantages present in one environment are replaced by disadvantages in others.  This is the biological analogue of incomensurability when we are considering enhancement of otherwise normal traits.  We get convergence on the disadvantages suffered by the group that does badly across environments, which is analogous to the convergence of the equal capabilities and normal function models on those with disease and impairment.

          This qualification of the equal capability model has implications for the argument that equality of opportunity pushes us toward a much more expansive model of medical interventions.  The equal capability model does commit us to assuring individuals that their capability sets are not clearly worse than those of others, and in this it goes beyond the normal functioning view, at least in its theoretical conception.  (In fact, it rather closely resembles what the "brute luck" calls for by way of levelling the playing field.)  As noted, this suggests that significant diseases and impairments will give rise to medical obligations, as on the normal functioning view.

          It may also be the case that when we find clear instances in which even "normal" individuals fall well short of enjoying the capability sets others rank as superior, we may have obligations to enhance their sets.  Here, too, the equal capability account does not depart significantly from the normal functioning account, since that model allowed that we might have obligations, deriving from concerns about equality of opportunity, to provide enhancements on a case-by-case basis.  (We suggested that nontherapeutic abortions may actually be an example of this.)  What the equal capabilities model, properly analyzed, does not seem to imply--although we might have thought it would--is that whenever an individual lacks a capability that others enjoy, he or she has a claim on others for assistance in improving that capability.  The shortfall in capabilities, from the individual's perspective, may not be viewed as a significant shortfall from the perspective of others with different plans of life.[13]

          We can better see the force of this qualification through an example.  Suppose we are parents and we say to our friends, "Our son has some violin talent, but we cannot afford the best teacher for him.  Without the best teacher, he will only be able to play in the Social Center Orchestra later in life, but with the best teacher, he will be able to play in the City Orchestra later in life.  Other parents are able to secure the services of this teacher for their children, who have comparable potential.  We--and our son--are at a disadvantage.  Help us pay for the better teacher."  If our friends were obliged to help us whenever our capability sets fall short of those enjoyed by others--at least by our own judgments--then they would seem to be hostage to the ways in which we value our capabilities.

          Shifting the example to a social context and away from individual friendships does not really alter the point.  We do not deny people equality of opportunity if we do not assist them in improving or developing every capability they want that some other people happen to have.  If we thought equality of opportunity demanded that we assist people in these ways, we would make the principle hostage to expensive and demanding preferences individuals might have.  Just as we do not owe it to our friends or others in general to contribute our resources to making them happy when they are unhappy because they have developed extravagant tastes, so too we do not owe it to others to improve any and every capability that they judge to be disadvantageous to them, given their plans of life.

          This point has specific implications for capabilities that bear on access to jobs and offices, as Cohen (1995) has argued.  Suppose Jill succeeds in getting a job as office manager when Jack does not because Jill is better at motivating others to work and at resolving disputes.  Does Jack now have a complaint against us: his access to a job he wants is diminished because of a relative lack of the relevant interpersonal skills?  Or can we reasonably reply to Jack that he is welcome to practice these skills and improve them--there are courses offered at the local community college--but there are many other jobs he is already well suited to perform, and the social and educational opportunities he has already enjoyed have equipped him to compete fairly for a broad array of jobs.  Society owes him nothing further in the name of "equal opportunity," though he is free to invest further in himself.

          We turned to the equal capabilities model--whose name is no longer quite accurate (similarly, in Chapter Three, we suggested that the "brute luck" view requires only a "decent minimum" of capabilities)--because we thought it supported in a quite natural way a more expansive view of the role of health care (or, alternatively, a recognition that the demands of equal opportunity extend beyond health care).  At first sight, it seemed to push us toward any use of biotechnology, whether an enhancement or a treatment, that eliminates disadvantages in opportunity produced by inequalities in our capability sets.

          But, appropriately qualified, the model demands much less.  In practice--if not in its underlying theoretical motivation--it comes quite close to the actual scope of the normal functioning view.  Where there are significant deficits, of the sort induced by serious disease and impairment, we get results similar to those given by the normal functioning view.  The normal functioning view allows for special case-by-case levelling up of obviously disadvantaging traits, and the (qualified) equal capabilities view calls for somewhat broader consideration of levelling up.  Without clear examples, it is not obvious what the practical difference is.  In any event, for a broad range of enhancements of normal capabilities, the equal capability model is actually much less demanding than it might have seemed.

          What is particularly striking, however, is that there can be convergence on a practical account of what equal opportunity requires despite some underlying divergence in philosophical rationale.  We return to this point later.

 

The Equal Opportunity for Welfare Model

The other more expansive interpretation of equal opportunity focuses on a central moral intuition--that we have a claim on others for assistance whenever we are worse off than they are through no fault or choice of our own (Cohen 1989 and Arneson 1988;[14] cf. Daniels 1990; and see Chapter Three). This is the single, underlying intuition that we earlier labelled the brute luck view.

          If we are miserable because we have chosen to cultivate extravagant tastes, or even because we affirm values it is costly to live up to, even if we did not originally choose to have them inculcated in us, or if we have bad "option" luck as a result of choices we make, then we do not have a claim on others.  Others do not owe it to us to make up for the bad or costly choices we have made.  But if we are miserable because we have had instilled in us--through no choice of our own--certain tastes or values that make it difficult for us to be as happy as others, then our equality of opportunity for welfare has been compromised, on this view.  Having had these costly preferences imposed on us is like other forms of bad "brute" luck, like other bad outcomes we might receive in the natural or social lottery for capabilities that give rise to egalitarian claims on others.

          Equal opportunity for welfare obtains when each person faces "an array of options that is equivalent to every other person's in terms of the prospects for preference satisfaction it offers" (Arneson 1988:87).  We should picture this in the following way.  Imagine that we represent a person's life as a decision tree in which all possible life histories are represented.  Equal opportunity for welfare obtains if the best path on each person's life-tree ex ante (before he actually makes any choices) has the same expected payoff in preference-satisfaction.  Branches in the tree represent all possible choices, including choices about which preferences to act on or to develop.

          We should note, since it is a point relevant to our discussion later, that there is a tremendous "information burden" here.  In a given case, how can we really tell whether a preference that makes someone miserable is one that he "chose" to develop at some earlier point in life?  (This may point to a deeper incoherence in the account.  An unchosen preference may push Cathy [for example] below the happiness she would have had on the "best path" because of some other irrelevant choice about something else she made earlier.  Then Cathy is not owed assistance because, say, twenty years earlier, she could have gone left when she went right.  Alternatively, it seems possible in almost all cases to construct a counterfactual path where the path chosen would have constituted a "best path" comparable to the best path others enjoy.)

          We turned to this equal opportunity for welfare model in order to explain the "pull" toward an expansive view of the role of mental health interventions that we find in a case like that of the Unhappy Husband.  But we believe the model does not capture our real concerns about equality or equality of opportunity.  We shall argue that unchosen preferences that make us worse off than others do not generally arouse egalitarian concerns unless they can be assimilated to cases of psychological impairment--that is, to cases that would be treated on the standard model because they involve a departure from normal functioning.  In that case, they will merit some form of treatment, but not necessarily other forms of compensation.  This does not seem to be what is implied by an equal opportunity for welfare account.

          The point can be brought out by two hypothetical examples.[15]  Suppose John's mother raised him on Mrs. Morgan's Fish Sticks and that as a result he cannot stand the taste of fish (cf. Brandt 1979:120).  He becomes interested in the quality of his diet and otherwise quite adventuresome in his eating.  Nevertheless, he feels deprived that he is denied access to the broad range of food pleasures that would come from eating and enjoying seafood.  He feels ill, however, at the very thought of eating fish.  We might even suppose this aversion makes him feel he should not pursue a career as a restaurant critic.  If his opportunity for welfare falls below that of others because of this aversion, does he have a legitimate egalitarian claim for compensation?

          Suppose Jane's mother raised her to believe that a mother's duty is to stay home with her children and that no woman should pursue a career during her childbearing years.  Jane no longer believes that, has had a good career, and now faces the choice about what to do about childrearing.  But she feels so guilty at the thought of pursuing her career that she ends up staying home with her children.  Not only does this mean she is deeply disappointed about her sacrifice of career, but she resents the burden placed on her by her children and her mother.  Should she be compensated because her opportunity for welfare (or advantage) is less than others?

          Society is obligated to do something to help John or Jane only if their situations really reflect some underlying departure from normal functioning.  Ordinarily, it is expected that someone who does not like fish copes with his unwanted preference by pursuing his other tastes.  There's enough else that he likes that we expect him to adapt to his preferences, whatever their etiology.  If John was a compulsive or phobic personality, and if the aversion to fish were symptomatic of a more generalized inability to accommodate to his preferences or to reform and revise them over time, then we would be inclined to say that he is entitled to some form of therapy for the underlying disorder.  If, however, he then said that he really did not want the therapy, but preferred to "cash it in" for a week snorkling in Yucatan, then it would be appropriate to refuse him the alternative.  What this indicates is that we are not interested in moving John to the point where his opportunity for welfare is equal to others.  We are only interested in making sure that he has the mental capability to form and revise his ends in a normal fashion.  Beyond that, we reasonably hold him responsible for his preferences.[16]

          Our response to Jane is similar.  If she suffers from a more generalized incapacity to form and revise her ends over time, perhaps as the result of some unresolved problems in her relationship with her mother, then we believe she is entitled to access to the appropriate form of therapy or group support.  We would not be willing, however, to substitute other forms of compensation aimed at moving her back to equal opportunity for welfare.  What does the work here is the belief that there is some underlying handicapping condition.

          So it is not explict choice that matters, but the underlying normal capacity for revising our ends--our goals, values, and preferences--that is at issue.  If we have independent reasons to believe that a preference--whether chosen or not, whether identified with or not--cannot be eliminated and is handicapping because of a broader, underlying handicapping condition, then we have reasons to make certain resources available as compensation.  It is not the unchosen taste, or the fact that the taste is unchosen, that gives rise to the claim on us.  Rather, it is the underlying mental or emotional impairment, and the taste, chosen or not, is but a symptom.

          In our hard cases--Billy and Johnny and the Shy Bipolar--we saw that we were pulled in two ways to expand our commitments to assist others beyond simply restoring normal function, which is all that is implied by the normal function model of equal opportunity.  These two expansive pulls have their philosophical models in two alternative interpretations of the demands of equal opportunity (or more egalitarian concerns): the "equal" capabilities model and the equal opportunity for welfare model.  We looked to these models for support for the view that we "owed" Billy growth hormone treatment no less than Johnny, or the Shy Bipolar therapy no more than a normally shy person, or the Unhappy Husband assistance despite his lack of mental disorder.

          But our discussion of these two philosophical models suggests they do not support an expanded view of our commitments in health care in any so direct a fashion as they promised.  Thus a commitment to the more expansive view that all inequalities in capabilities give rise to a claim on us does not imply the claim is to eliminate the inequality through medical interventions.  It may simply force us to mitigate the effects of underserved inequalities through other measures we take in our overall approach to justice.  Similarly, there is good reason to resist the suggestion that society owes an individual compensation, and health care in particular does, whenever she is less happy than others through no fault of her own.  If what is making a person unhappy is an underlying psychological impairment, then she may have a legitimate claim for medical assistance (resources permitting).  In the absence of an underlying disorder or incapacity in the ability to form and revise our ends or goals, the responsibility for our unhappiness is reasonably placed on our own shoulders.

 

The Normal Function Model as Better Public Policy

The treatment/enhancement distinction was challenged by our hard cases in two ways, each calling for a more expansive role for medicine, either to eliminate disadvantages in capabilities or to reduce some form of unhappiness.  The distinction seemed to provide a reasonable way to delimit the scope of our obligations to use medical services to protect equality of opportunity, at least on the standard interpretation of equal opportunity.  But each challenge seemed to draw support from alternative philosophical interpretations of the limits of equal opportunity.

          So far we have suggested that neither alternative expansive interpretation of equal opportunity gives strong support to abandoning the treatment/enhancement distinction.  This does not constitute a strong, positive argument for the normal functioning interpretation and the way in which it incorporates the treatment/enhancement distinction.  It just shows, if we are right, that two challenges to that view are not as powerful as they might have seemed at first, and in any case do not have as significant a practical implication as we might have thought.  Still, the hard cases leave a bad taste of arbitrariness, and it is important to see if some other considerations can provide support for the distinction and the normal functioning interpretation it is attached to.  Specifically, it may be useful to consider the role played in public policy, in institutions aimed at fair practices that people can agree on, by the treatment/enhancement distinction.

          To be useful in a public policy domain, a distinction such as that on treatment and enhancement must pass three tests:  Does it make distinctions the public and clinicians regard as fair on reflection?  Can it be administered with reasonable effectiveness in the real world?  And does it lead to results that society can afford?[17]  We believe that the treatment/enhancement distinction and a goal of health care aimed at maintaining normal functioning meets these three criteria better than more expansive views of equal opportunity. 

          The hard cases we considered brought out points of disagreement among alternative accounts, but we should not let them blind us to the considerable convergence on the importance of treatments for disease and impairment.  All developed societies recognize the importance of assisting people in the treatment of disease and impairment; only in a few borderline instances do these societies use their health care resources for cases of enhancement.  Where disease and impairment have some significant impact on the opportunities open to us, and where we can effectively respond to them with some form of health care, all three accounts agree on the importance of treatment.  Thus where "capability sets" (as in Sen) would be compromised by disease or impairment, so too would there be an impact on individual's fair shares of the normal opportunity range for their society (Daniels); where there are such effects of disease or impairment, there is likely to be a significant impact on the opportunity for welfare as well.  Conversely, where a disease or impairment has little effect on capability sets, it is likely to have an unimportant effect on the range of opportunities open to people, including their opportunities for welfare.

          In the case of treatments, medical and psychiatric science gives us elaborate diagnostic categories about which there is considerable agreement: clinicians can recognize and more or less reliably identify these disorders, and patients can be told about the condition they suffer.  For example, although individual cases can pose difficult or insoluble diagnostic dilemmas, psychiatry has developed publicly accepted methods--currently embodied in DSM IV--by which agreed upon diagnoses can generally be established.[18]  Our very general concern to meet people's health care needs for treatment of disease and impairment can be precisely focused around reliably identifiable instances.

          The situation is different for enhancements.  We already saw the disagreement that underlies the importance of incommensurability for Sen and the difficulty of unpacking counterfactual claims about choice for the Cohen-Arneson view of equality of welfare.  Intuitively, controversy about enhancements is much more widespread.  When is being shorter or shyer or less beautiful than we would like a disadvantage that warrants the assistance of others?  Whenever we feel it is?  When we cannot adapt to our situation through reasonable efforts?  When we have set our hearts on particular goals in life?

          If we simply take individuals' assessments at face value, then we--as a society or as insurers--again encounter moral hazard, as discussed earlier.  If we do not take complainants at face value, how are we to investigate their claims?  Have they made reasonable efforts to overcome the condition--participating in social events, asking others for tips on socializing, taking public speaking classes, and so forth?  Did they bring it on themselves, as by wishing to consort only with rich, beautiful and famous people who intimidate them and elicit shyness?  We have little idea of how to delve into questions like this.  And many of us are very likely to disagree extensively about how to assess these claims.

          If the Unhappy Husband invokes the equal opportunity for welfare model and requests treatment on the grounds that he did not choose to be so committed to traditional family values, but was raised to be, similar problems arise.  If we do not investigate, we create substantial risk of moral hazard.  But if we do investigate, we are faced with a task for which we have few skills--reconstructing the history of his choices and assessing how responsible he is for creating and sustaining the attitudes and behaviors from which he suffers.

          Public support for mental health insurance coverage--historically tenuous at best and less secure than coverage for physical health--might be compromised further if the public believed that third-party resources were subject to even more moral hazard than exists at present.  If the public believed that mental health interventions replace reasonable efforts to modify someone's attitudes and behaviors or to extend a person's capacities through learning and practice, support would wane.  But this same erosion would occur for physical health care if people saw that scarce medical resources were being diverted into controversial enhancements, perhaps even at the expense of clear cases of untreated disease or impairment.  Our willingness to continue to cooperate depends on our assurance that the terms of cooperation remain fair.  But opening the door to moral hazard removes that possibility.  It might even be more important to us to adhere to a line that seems arbitrary in some occasional hard cases in order to protect the general confidence people place in the fairness of the scheme overall.

          Insurance administrators are acutely aware that clinicians can always find ways to circumvent insurance restrictions.  No model prevents the possibility of "gaming" (Morreim 1991), and a recent survey of clinicians showed that 68 percent were willing to deceive third-party payers if they believed coverage criteria were unfair (Novack, et al. 1989).  While clear criteria and monitoring systems make gaming more difficult, the most effective antidote is for clinicians and their patients to understand and endorse the rationale for the model used to determine coverage and to believe in the integrity of the system within which allocative decisions are made (Daniels 1986).

 

Is the Normal Function Model a Moral "Second-Best"?

Do these policy-based arguments mean that we are really abandoning the clear, clean moral basis underlying our concern for assisting others as an obligation of justice?  Are we accepting the treatment/enhancement distinction as a pragmatically forced compromise?  Is it not ideal, but only a second-best solution?

          Suppose we could agree that there was really one central moral principle or reason (or even intuition) underlying our egalitarian desire to assist others or compensate people who fall short in a relevant way of achieving equality.  For the sake of argument, suppose it was the principle appealed to by G.A. Cohen (1989) and Arneson (1988) (referred to in Chapter Three as the rationale for the brute luck view)--namely, that we owe something to people when they fall short of equal opportunity for welfare through no fault or choice of their own.  Then an argument that we should nevertheless use the treatment/enhancement distinction because it is more readily administered, or because it more readily provides a focus for public agreement than a criterion that calls for case-by-case evaluation of fault or past choices, might seem like a clear compromise with the ideal rationale.  Billy, for example, or even the Unhappy Husband may be denied therapy they may benefit from simply because they do not suffer from a disease or impairment, as recognized by the medical establishment.

          The defense of the treatment/enhancement distinction might then look like the kind of defense of a rule that might be offered by a utilitarian: it is simply too costly and inefficient to try to calculate utility directly in each case, but a rule of thumb gives us the practical way to approximate a utilitarian calculation.  Just as we remain uncomfortable with this defense of rules when we know that applying them violates the principle of utility in particular cases, so too we remain uncomfortable with such a defense of the treatment/enhancement rule of thumb when we know we are in a situation that really constitutes a counterexample to it, as our hard cases seem to.

          One way to counter this suggestion is to challenge the premise on which it rests--the assumption that we are abandoning a superior moral intuition that should govern this domain of cases.  We have already argued that the alternative glosses on equal opportunity do not so readily support expansive alternatives to the standard view of the goals of health care as they might have seemed to.  (At the same time, we readily admitted that the normal functioning account does not limit our obligations in health care to the primary rationale.)  We here offer a different line of argument: that we should distinguish an area of public concerns about fair distribution of health care (or similar goods)--call it political--from a broader range of contexts in which we (or some of us) may have egalitarian intuitions or beliefs about distribution, and that the normal function account is more appropriate as a political conception than the other glosses on equal opportunity we have considered.

          We may begin by asking whether our egalitarian concerns all have one goal or target like the one captured by the claim that we are entitled to concern when we are worse off through no fault of our own.  Do all our egalitarian concerns, regardless of context, originate in this one, disarmingly simple intuition? We doubt it; we are skeptical that the egalitarian inclinations we show in diverse moral contexts all have a single explanation.  When we are concerned about responding to the needs and preferences of our children, or our friends, or our colleagues, or when we chair a department, it is not obvious that our egalitarian concerns are all cut from one uniform moral fabric.  The suspicion that they are not grows stronger when we compare our egalitarian concerns in these contexts with our concerns in wider, public arenas.  This skepticism about the uniformity of egalitarian concerns across all moral and political domains--a skepticism expressed by Rawls's more complex view of the structure of a theory of justice--stands in contrast with the perspective that underlies the positions taken by Sen, Arneson, and Cohen.  They argue as if one target‑‑equal capabilities, or equal opportunity for welfare or advantage‑‑comprehensively captures our egalitarian concerns. 

          Whether such uniformity exists affects how we should react to the egalitarian concerns evidenced in certain cases.  Suppose that we sometimes do take deficits in opportunity for welfare into account when we think about examples of individuals who suffer from unchosen and unwanted preferences.  Perhaps we do this with people we know very well, such as friends or family.  Maybe we do this when we understand‑‑or perhaps share‑‑in some detail their conception of the good, and when we have fairly reliable knowledge of what is responsible for their dissatisfaction in life, and perhaps we feel some special responsibility to help them because of our particular relationship to them.  Would such responses show that a theory of justice governing basic social institutions must respond to the same egalitarian concerns and have the same target?  Is our concern for the relative well‑being of others in these instances of a piece with the concerns we might express about how society as a whole should react to inequalities in citizens' relative well-being?

          The isolated examples appealed to by theorists like Arneson and Cohen to elicit intuitions about the moral arbitrariness of brute luck do not show that there is a unified target underlying our concerns for the relative well‑being of others.  Nor do they show that our concerns in the public domain were just "approximations" of what interested us in private settings--for example, that it was "only" for administrative reasons that we "compromised" our concerns in the public domain.  What should be of moral relevance in the public domain may not be what is relevant in private domains.  What we count as just for basic social institutions may not merely be a necessary departure from what egalitarian concerns "in theory" or "ideally" require.  The underlying the approach to ethics taken by many philosophers assumes that there will be in all contexts a uniform answer to our concerns about equality. But this is an unargued assumption.

          This point has epistemological or justificatory implications: it is not clear what kinds of counterexamples to count as evidence in the debate about the target of equality.  Our showing that for purposes of justice we are not and should not be concerned about making choice or its absence as central as Cohen would have it does not show that is an inappropriate focus for egalitarian concerns in other contexts.  By the same token, positive evidence that in some individualized contexts we are concerned with actual choices and their impact on opportunity for welfare would not show that this is the target for theories of justice for basic social institutions.  Only if we already believed in the uniformity of our egalitarian concerns would examples in one context count as counterexamples to claims about the target in another kind of context.  Without the belief in uniformity, we may only have evidence about how to divide our egalitarian concerns into different domains with different targets.

          Rawls's (1971) claim that his principles of justice apply to basic institutions and not to private exchanges opens the door to rejecting the uniformity of egalitarian concerns.  Rawls's (1977) replies to Nozick (1974) on this issue elaborate the early form of this argument.  Rawls's (1993) more recent elaboration of the claim that his theory is a "political conception" of justice brings a quite different set of arguments to bear on the question of uniformity.  It will be helpful to paraphrase this later view, since it is an explicit attempt to argue against the uniformity thesis.

          Any political conception of justice must accept certain "general facts" of political sociology.  These include the following: there is a diversity of comprehensive religious, philosophical, and moral doctrines (the fact of pluralism); only oppressive use of state power could maintain common affirmation of a comprehensive doctrine; a stable democratic regime requires widespread, free support by a substantial majority; and the political culture of stable democracies normally contains fundamental intuitive ideas that can serve as the basis for a political conception of justice.

          A political conception of justice has three main features.  First, although it is a moral conception, it is developed and applied only to a specific subject--the basic institutions of a democractic regime.  Second, people accept it on the basis of accepting certain fundamental, intuitive ideas present in the political culture.  One such fundamental idea is that society is a fair system of social cooperation over time, across generations; another is that citizens are free and equal persons capable of cooperating over a full life.  Third, accepting the political conception does not presuppose accepting a comprehensive moral doctrine; nor is the political conception a "compromise" tailored to fit the range of comprehensive doctrines present in the society.  Nevertheless, supporters of divergent comprehensive doctrines can achieve an "overlapping consensus" on an appropriate political conception.  (We get what might be called "moral epistemology politicized"; cf. Rawls 1993, Daniels 1996: Ch 8.)

          Let us return to the convergence--in practice--on what equal opportunity requires, even given the feasibility of modestly redistributing capabilities.  The normal functioning view seems to stay closest to the conception of equal opportunity widely held in our culture since it retains, quite centrally, the idea of competition on the basis of capabilities that might vary naturally.  Suppose we take Sen to be articulating a "comprehensive moral view" that gives considerable prominence to the idea of positive freedom.  From within that view, the normal functioning view could be justified as an approximation to a slightly more expansive ideal.  Similarly, suppose we take Cohen and Arneson to be articulating a principle that involves compensation for unchosen disadvantages--a version of the "brute luck" view described in Chapter Three.

          From the perspective of that comprehensive moral view, the normal functioning account is also justifiable.  Both Sen, from one perspective, and Cohen and Arneson, from another, might want to push beyond the normal functioning view, but they can at least support it.  If proponents of both other views could come to see that the kinds of reasons needed to pull us beyond the scope of the normal functioning view will derive from "comprehensive" views that not all reasonable people can accept, then they might also accommodate themselves to the political conception that includes only the normal functioning view. 

          Our intention here is not to defend Rawls's view that we must seek political conceptions of justice.  Rather, we have tried to make explicit how such a view bears on the thesis that our egalitarian concerns must all be uniform--that is, subsumable under one central principle or rationale, as they are on Sen's view or the Arneson-Cohen view, regardless of the domain of our concerns in which they arise.  Since uniformity is not established, we are unsure how to construe the "evidence" from certain kinds of examples, where we may be tapping into intuitions involving comprehensive views, not the political conception on which there is overlapping consensus.

          The public role that the treatment/enhancement distinction plays is not appropriately tested by matching it to such comprehensive moral views.  Instead, the fact that all three models overlap in the importance they attach to treating disease and impairment and that each allows some arguments for enhancement in special cases beyond that suggests this is a politically appropriate core that people who disagree about the demands of equality in other domains might nevertheless agree on.

          We conclude this section with a comment that bears on the argument offered here but that has broader implications for this book as a whole.  Four philosophers with considerable differences in philosophical beliefs and methods collaborated in writing this book.  As noted in the preface, we worked to resolve our disagreements, but we did not fully succeed.  One area of lingering tension concerns the usefulness of the treatment/enhancement distinction and the broader issue about the scope of the demands of equal opportunity.  Some of us want to push a particular set of intuitions about what equality demands in the redistribution of capabilities; others resist this push, giving more weight to the treatment/enhancement distinction and the related issue of a baseline distribution of capabilities.

          This tension has its roots in some broad matters of style: some of us are more impressed with apparent counterexamples to certain efforts at drawing lines, expecting cleaner principles to be underline the distinctions; others find room elsewhere in their own "wide reflective equilibria" to accommodate the examples.  The tension may also have its roots in different degrees of acceptance of the idea that justice is "political" and that we may not be able to test the acceptability of principles of justice through appeal to the full range of our considered moral views.

 

Is the Treatment/Enhancement Distinction a Natural Baseline?

Throughout this section, we have assumed that the treatment/enhancement distinction can be drawn in a reasonably clear fashion, even though there may be some grey areas and hard cases, and we have concentrated on its moral implications.  We shall now revisit that assumption, which has been the focus of considerable controversy within the philosophy of medicine, but we shall limit our discussion rather severely.  Our concern is primarily with how the central debate affects the ethical implications of the distinction, not the fine details of debates in the philosophy of biology.  We believe it is possible to set aside most of the actual controversy, at least for our purposes.

          The central conceptual issue, and the focus of considerable controversy, is whether the concept of disease and impairment and the treatment/enhancement distinction can be drawn by reference to a "natural baseline," such as departures from species-typical normal functioning, or whether the concept of disease and impairment is fundamentally evaluative.  The extreme of the evaluative view is that a disease or impairment is simply an unwanted condition.  Earlier, we described the "social construction" view, which places the evaluation in the hands of some social agency, perhaps the medical profession, or perhaps some broader interaction between the profession, patients, and other cultural and political institutions.

          Historically, of course, we can point to many instances in which conditions or behaviors were viewed as examples of disease or impairment--masturbation or homosexuality, or the running-away disease of slaves (Engelhardt 1974)--but these do not show us that diseases and impairments are just what society makes them out to be, given its values.  We recognize the error in what was done; it is not simply a matter of social custom, like not shaking hands with the left hand.  The real philosophical debate (in the philosophy of biology, not political philosophy) turns on whether we can characterize in the appropriate way, for purposes of theory, certain functions of individuals that are typical for members of that species and distinguish population variation in those functions from cases of disease and impairment.  It is this piece of the debate that we cannot enter into here.

          Rather, some points we have already made about justice in a pluralist society have a bearing on the part of this debate that is relevant for us.  The point behind appealing to a natural baseline that is not itself heavily value-based is that people may agree that it forms a reasonable and relevant basis for public action, despite many other disagreements they may have about other issues of value.  Despite numerous other sorts of comprehensive moral views, people may agree that maintaining normal functioning contributes in a reasonable and central way to protecting equality of opportunity.  Depending on those other views, they may agree that any inequality in capabilities or capability sets is a source of moral concern.  Or they may believe that individuals who are unhappy because of particular attitudes or beliefs they have acquired, through no choice of their own, are owed compensation for their unhappiness.  Actually, we may find some disagreements about these matters, with many individuals wanting to hold people more directly responsible for their ends and others taking a more "compassionate" view.  But this variation tends to show up outside the core area of agreement about the role of disease and impairment.

          The point that emerges here is that the natural baseline has no metaphysical importance: it is not that we must pay some special respect to what is natural, for example, by maintaining or restoring it.  Rather, the natural baseline has become a focal point for convergence in our public conception of what we owe each other by way of medical assistance or health care protection.  To develop fair terms of cooperation, we should not have to resolve our disputes about these comprehensive moral views.  Nor should we have to settle an abstract issue in the philosophy of biology. 

          Suppose that the apparently natural baseline appealed to here does, in various ways, as it has in the past, contain hidden appeals to the values of special groups.  Suppose it is a "social construct" after all and draws on some disguised comprehensive moral views.  Then our only recourse is to hope that over time there are internal critical pressures within the biomedical sciences that work to expose the special role played by these valuations.  Just as we have evidence over time that we have often sneaked valuations into our categorization of diseases, so too we have evidence that we have rooted some of them out.  The optimistic view is that there are pressures here that tend to work against any values that are not at least widely shared.  This is a partial recognition of the tendency of the sciences to be compatible with pluralism.

          The position we are defending, then, does not insist that the natural baseline is completely natural and that no valuations incompatible with pluralism have emerged within it.  But we do believe that our best hope of sustaining a point around which we can achieve principled, uncoerced social agreement is one that most assiduously avoids incorporating valuations into its definition of disease and impairment, even if it cannot completely do so.  The baseline that emerges over time is most likely one that is compatible with the demands of justice in a pluralist society.

 

IV. Positive Versus Negative Genetic Interventions and the Permissible/Impermissible Boundary

A Reminder About Science Fiction

We have argued that the treatment/enhancement distinction is a useful one provided that we do not expect too much of it.  Specifically, we should not expect that it coincides exactly with the boundary between the health care services we are obliged to provide people, given all our obligations, and those that are nonobligatory.  Still, it is a reasonable distinction for use within our primary rationale for including services in a health care benefit package.  It remains reasonable even in light of expanded ability we may develop to enhance some otherwise normal traits.  Dropping it in favor of more expansive views of our medical obligations has distinct disadvantages from a public policy perspective and no compelling arguments for it from a moral perspective.

          But as emphasized earlier, we may have other obligations, including those that derive from considerations of justice, such as our concern to promote equality of opportunity, which may compel us to offer some interventions that count as enhancements.  Suppose we had a genetic technology that allowed us to enhance immune capabilities beyond those involved in normal functioning (cf. Kitcher 1995).  Then, like vaccinations--which have an analogous effect--we might well be obliged to provide this enhancement as part of a medical benefit package (costs and resource constraints permitting).  Suppose we had an intervention that allowed us to improve reading or math skills, perhaps through an effect on short-term memory, attention, or some other component of cognitive processing capabilities.  Suppose further that its effect is more pronounced for those who perform in the lower half of the normal performance distribution, so that it reduces variance in reading ability by pulling up the bottom.  Then, just as we would consider it remiss if educational institutions did not incorporate a pedagogical technique that had the same effects, we might think medical institutions should provide the intervention, costs and resources permitting.  Our arguments would turn on the effects on equality of opportunity and on considerations of social productivity.  But providing the therapy for some would not be fair without providing it for all (or for all for whom it is reasonably effective).  We return to these issues of fairness in enhancements in Chapter Six.

          We must now see if the treatment/enhancement distinction has any bearing at all on the moral boundary between permissible and impermissible germline or somatic cell genetic therapies.  We shall argue that here, too, the distinction will be of much less use for this purpose, though it may well raise some moral warning flags that require attention.

          It is important to emphasize that talk about genetic enhancements is fanciful, given our current knowledge (Kitcher 1995; see also Appendix One).  Our current ability to identify alleles and their effects on a phenotype depends on the mutant form producing large, damaging effects that work for the most part independently of the genome and environment.  Because these cases involve a devastating harm, it is more likely that the benefits of intervention outweigh the risks.  Our ability to identify genes and to replace them with some precision, as well as the ratio of risks to benefits, all work to make treatments of devastating genetic conditions a more likely scenario than interventions to enhance otherwise normal capabilities.  Talking about enhancements, then, presupposes that major gaps in our knowledge and technological capabilities are filled, for otherwise we could never be confident that the direct medical risks of intervention were outweighed by the benefits of enhancement.

          The premise behind the rest of this chapter as well as Chapter Six is that there is some prospect for vastly improving our knowledge and skills.  Even so, some scientists are deeply skeptical that for multifactorial traits--like most cognitive functions, strength, height, and immune capabilities--it is anything more than science fiction to talk about their enhancement.  On that view, we are engaged in the ethics of science fiction, not applied ethics.  Despite this warning, and partly because the issues attract attention in any case, we shall continue our argument.

 

Negative and Positive and the Permissible/Impermissible Boundary

Just as the treatment/enhancement distinction does not coincide with the obligatory/nonobligatory boundary, so too it does not coincide with the permissible/impermissible boundary.  Not all treatments will be permissible and not all enhancements will be impermissible.  As examples of permissible enhancements, Kitcher (1995) suggests an improvement to the immune system and possibly an intervention to prevent memory loss during aging.  These enhancements might be highly beneficial without posing any significant risks.  The strength of the immune example comes from its close analogy to vaccinations, which exploit more fully our immune capabilities rather than extending them.  The difference seems morally irrelevant.  As Kitcher suggests, adapting an old argument from Hume, we are no more "playing God" by altering people genetically so that they have greater immunity than we are when we  give them vaccinations.

          Similarly, just because a genetic intervention counts as an effective treatment does not mean we are obliged to include it in our repertoire of permissible medical treatments.  Suppose that we could treat a condition through a somatic intervention, with the consent of the patient, or through a germline intervention, for which only consent of the parents were possible.  If this were a case where the germline intervention had no additional benefits to the patient (although it might have for offspring), then we might prefer the direct consent of the patient to the proxy consent of the parents.  Other moral constraints thus apply, and therefore being an effective treatment is not a sufficient condition for an intervention being permissible.

 

Treatment/Enhancement and Moral Warning Flags

Even if the treatment/enhancement distinction does not provide us with a simple criterion for deciding what genetic interventions are permissible and impermissible, there is good reason to think that many enhancements will pose serious problems not posed by treatments.  For whole classes of cases, certain enhancements may be impermissible for reasons that are unlikely to arise for treatments or for reasons that can be more easily dealt with in the case of treatments.  Knowing that something is an enhancement should thus raise a moral warning flag, which is the central implication for public policy.

          Three types of warnings about enhancements that we do not encounter with treatments are worth noting here.  First, there are public goods and other coordination problems that arise when all parents pursue a course intended to be "best" for their offspring.  For example, gender selection to prevent genetic disease or impairment is pursued only by affected families and has no significant effect on gender ratios in subsequent generations.  In contrast, gender selection for economic or religious reasons can modify gender ratios; not only is the gender selection for some of these reasons objectionable for reasons of justice, but the effect may be self-defeating.  For example, parents seeking economic advantage for their male offspring may find they contribute to an oversupply of male offspring, making each less valuable.

          Second, pursuit of "positional advantage" through enhancement of some traits, such as height, risks being either self-defeating or unfair.  If all can do it, it may be self-defeating: no one gains a height advantage if everyone increases in height.  If only the wealthiest can pursue enhancement, it seems unfair that advantages so ramify.  In contrast, treatment of extreme shortness induced by disease will face neither objection.

          Third, we generally agree that eliminating disease and impairment works to the advantage of those who end up functioning normally, but whether some enhancements constitute benefits will depend on the values individuals hold, and parents' values may not always coincide with those of their offspring.  So the problems we face determining what counts as a benefit and who should decide that go beyond the problems faced by parents making proxy decisions about treatment of disease and impairment.

          This chapter has explored in depth the relative risks of genetic treatments versus enhancements. The next develops the moral case for intervening in order to avoid or reduce risk--the risk of genetically transmitted harms--and examines the conflict between the obligation to prevent such harms and reproductive freedom.


Endnotes



[1]. Considerable complexity surrounds the notion of "responsibility" for ends and responsibility for a person's own misfortune or suffering.  Consequently, clarifying how we draw distinctions between needs and desires ultimately draws us into a tangled web of moral concepts and distinctions that we do not presume to sort out in detail here.

[2]. Throughout this chapter, we equate an adverse departure from normal species functioning (or functional organization) with either disease or impairment.  In Chapter Three we talk about the social construction of disabilities: some impairments of normal functioning will have an impact on important functions in ways that lead us to view them as disabilities, others do not.  In this chapter, we allow similar room for societally relative "construction" by noting that some impairments do not have enough impact on the individual's share of the normal opportunity range for us to consider them morally important disabilities, just as some diseases may not warrant treatment because they have so little impact on us.

[3]. Using Daniels's (1985) account, described in this section, the importance of the need is explained by reference to its impact on an individual's fair share of the normal opportunity range for his or her society.  In an abstract way, this characterizes the expection of disadvantage an individual may have relative to a baseline of talents and skills.

[4]. Though we note Boorse's work as one way of characterizing normal functioning, we are aware that it fails to accommodate all cases that a successful account in the philosophy of biology would have to address.  We do not believe, however, that we must refrain from using a notion of normal functioning in ethics and political philosophy until a "true" account of functions emerges in the philosophy of biology.

[5]. Our discussion does not depend on a strong claim about the non-normativeness of judgments about disease of the sort made by Boorse (1976).  Such a claim depends on being able to distinguish genetic variation from disease, and, more specifically, on specifying the range of environments taken as "natural" for the purpose of revealing dysfunction.  The problem facing this strong claim is that some socially created environments should be counted as "natural" but others not.  Our discussion turns on a weaker claim.  It is enough for our purposes that the line between disease and its absence is, for the general run of cases, uncontroversial and ascertainable through publicly acceptable methods, such as those of the biometical sciences.  It will not matter if what counts as a disease category is relative to some features of social roles in a given society, and thus to some normative judgments, provided the core of the notion of species-normal functioning is left intact. This qualification is made in Daniels (1985:30).

[6]. Rawls (1971:73) defines equal opportunity as follows: "those who are at the same level of talent and ability, and have the same willingness to use them, should have the same prospects of success regardless of their initial place in the social system."  As  Christiano has pointed out to us, this does not rule out using medicine to enhance the prospects of success of an individual by changing natural qualities of persons that are not directly related to the talents they have.  The extension of Rawls's account is thus not incompatible with its initial statement and may be less an extension than it appears.  In any case, Rawls (1993:184n14) seems to endorse the extension that Daniels proposes.

[7]. Some might object that the terminology is misleading: the principle actually supported does not really call for equality in opportunity, but only some adequate range of opportunities.  Since protecting normal functioning while leaving a "natural" baseline of talents and skills in place leads to individuals having different "fair shares" of the normal opportunity range for their society, equal opportunity does not, after all, assure strict equality of opportunity.  The debate about the scope of "equality of opportunity" is pursued in the next main section of this chapter, when we discuss three philosophical models of the principle.

[8]. On the view described here, what equal opportunity requires is specified only after its integration with other elements of a theory of justice. An alternative view also has some plausibiity. On this alternative, when we integrate concerns about efficiency, we simply choose not to realize fully what equal opportunity requires in order to give reasonable weight to other aspects of justice. This view might seem to preserve more of the intuition behind the "brute luck" interpretation, i.e., that we we have a claim on others when we are at a disadvantage through no fault of our own. 

[9]. Should we think of the deficiency in capability as giving rise to a defeasible claim, if not ultimately a defensible claim?  On the normal function model, if the deficiency falls within the normal range and is not itself produced by disease, diability, or unfair social practices, then we ultimately recognize no claim here.  Is this still a "defeasible" claim, one defeated by these etiological criteria, or should we say that defeasible claims arise only after these criteria are met?  For example, reasonable resource limits might still defeat the claim that satisfied these criteria.  We are inclined to say that defeasible claims arise only after the criteria that distinguish the theory are met.  As we shall see in our discussion of the equal capabilities model, not every disadvantage in capabilities on this model gives rise to a final claim: incommensurable differences do not count.  Since the account of commensurability is a distinguishing feature of the theory, however, by parallel reasoning we should not call this a defeasible claim either.  Here too, reasonable limits on resources may defeat a defeasible claim that some disadvantage in capabilities is present and gives rise to obligations to compensate.

[10]. Others have pursued accounts of capabilities, for example Nussbaum (need citation), that may or may not be open to some of the objections raised below.  We concentrate here on Sen's account because it has stimulated so much discussion and is explicitly raised as a critique of Rawls's account.  See Rawls (1993:183-90) for his reply to Sen.

[11]. Sen does not want an individual's decision to develop some capabilities at the expense of others to give rise to a further claim on others for resources just because the choice means some capabilities have been sacrificed.  A similar point must be accommodated within Daniels's account of the effect of disease on the range of opportunities open to individuals.  Daniels distinguishes the normal opportunity range--the array of life plans reasonable people will choose, given their talents and skills, in a given society--from the effective opportunity range that an individual has as a result of choices to develop some talents and skills rather than others.  From the perspective of an individual who has a particular plan of life and who has developed certain skills accordingly, the effective opportunity range will only be a part of the fair share of the normal range.  For purposes of justice, we ignore the individual assessments of the importance of a given function that derive from particular conceptions of the good.  Of course, impact on the effective range may be important in micro-allocation decisions, including those by individuals about whether they want to receive certain services.

[12]. We are indebted to Richard Lewontin for this point and the citation for the accompanying diagram.

[13]. Notice how important it is that we have a basis for public agreement on the conditions under which we owe assistance to others--that is, on terms of fair cooperation.  Later in this chapter we comment on the importance of the role of publicly acceptable grounds for agreement that abstract from differences in conceptions of the good life.

[14]. Cohen (1989) includes welfare, construed as desire satisfaction, within his notion of "advantage," but advantage is broader than mere welfare.  Arneson uses a narrower notion of welfare as desire satisfaction.  To the extent that advantage includes capabilities, Cohen's account overlaps with Sen's, though Sen, like Rawls, thinks that the target of our egalitarian concerns is not in any way focused on welfare.

[15]. The next couple of paragraphs draw on Daniels 1990.

[16]. Should we hold people responsible for their ends when they deliberately undertake or court some risks, as in skiing or sky diving?  When we want people to internalize the costs of their own choices is a complex question.  As Fried (1969) points out in a different context, we all impose risks on others--for example, when we drive to the corner store for a newspaper--for which we do not expect to have to compensate people.  There is a reasonable reciprocity in risk imposition here.  Perhaps we should accept some further reasonable reciprocity in expecting assistance regarding the risks we take pursuing a reasonable range of human adventures, since all can expect to want to pursue some pleasures (eating, drinking, hiking, running, bicycling, scuba diving) that involve taking risks.  (See Wikler 1978.)

[17]. As Robert Cook-Degan points out (personal communication), a further relevant consideration is whether it leads to stable judgments over time.  Advancements in science may make some distinctions less useful, including classifications of disease.

[18]. Of course, as an examination of the successive revisions of the DSM shows, professional agreement at one point in time embodies a host of errors, some of which are recognized in later revisions.  Just which agreements have biological validity is something we can only determine in light of the overall state of the biomedical sciences, broadly construed.