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.
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