There are essentially two kinds of
edited collection: the one where contributors tackle diverse aspects of an
issue from pretty much the same disciplinary background, and the one where they
tackle the same topic but from very different perspectives.  This collection is
of the second type. It addresses a topic (quality of life) that is familiar
territory to medical ethicists and health care economists, but its focus on
disability will be unfamiliar to many readers, and the contributors’ plurality
of approaches usefully highlight both differences in opinion and
commonalities.  The editors pose the central problem like this. ”Genetic
technology has enabled us to test fetuses for an increasing number of diseases
and impairments. On the basis of this genetic information, prospective parents
can predict — and prevent — the birth of children likely to have those
conditions…Underlying and driving the spread of this testing are
controversial assumptions about health, impairment, and quality of life.”
(p.1) For disabled people, the key point is ”[t]he belief that people with
disabilities must lead lives of poor, or at least substantially lower, quality
because of their impairments” (p.12). Such a belief encourages two problematic
moves: assigning lower priority to disabled lives in allocating scarce
resources, and developing technologies designed to reduce the birth of people
with impairments.

In the first chapter Robert
Wachbroit outlines how quality of life assessments are used differently in the
clinic and in setting health policy. Like other contributors he notes the
artificiality of separating out health from other areas of life: ”many health
components affect well being only in conjunction with various nonhealth factors”
(p.30). He ends with an argument for transparency about the underlying values,
as distinct from the facts and probabilities, that shape public policies like
this. Anita Silvers questions the commodification of health and the assumption
that health can usefully be treated as a resource for successful living. A
major part of her critique centers on the epistemological, and ethical,
question of whose evaluation of life quality should be taken as authoritative —
disabled people, or supposedly objective experts? This is a point that comes up
again and again in these chapters.

In a philosophically flavored
chapter Dan Brock considers the apparently incompatible goals of preventing
genetically based disease, which at present really means preventing the
existence of people carrying the relevant genes, while at the same time showing
appropriate respect to people who already exist with those disabilities. He
covers the issue of defining quality of life, the puzzling absence of a central
underlying theory of what actually constitutes ”quality” in these debates,
and the philosophically subtle distinction between person-affecting and
non-person affecting harm prevention.  He concludes that parents are morally
required to avoid the birth of a severely disabled child, since any objective
measure of quality of life, he believes, must indicate a lower quality of life
for a disabled, rather than a nondisabled, person. Quality of life cannot be
defined solely in subjective terms: ” The fact that (subjective) satisfaction
is not diminished does not always show that a person’s overall quality of life
is not diminished” (p.76).

Brock’s position is explicitly
challenged by many of the other contributors. Ron Amundsen, for example,
foregrounds what he calls ”the Anomaly” of the fact that ”when asked about
the quality of their own lives, disabled people report a quality only slightly
lower than that reported by nondisabled people, and much higher than that
projected by nondisabled people” (p.103). Amundsen’s chapter unpicks, and
questions, the links between normality, opportunity and quality of life that he
finds in the work of Brock and others who use Christopher Boorse’s concept of ”species
typical function” to argue that ”the importance of health care is to maintain
normal function…Normality is important because of its essential connection to
opportunity. Species-abnormal functioning reduces the ‘normal’ opportunity
range, while health care maintains and restores species-normal functioning,
thereby protecting opportunity…Brock then argues that a ‘normal’ wide
opportunity range is a necessary condition for a high quality of life”
(p.105).  The next chapter, by Erik Nord, is also more sympathetic to the
subjective element in quality of life assessment. He looks rigorously at the
values implicit in health state scores in handling QALYs and DALYs, and again
refers to the problems of defining the concept of quality of life, and who
should be asked when assigning values to health states.

Two consecutive chapters then take
a more overtly ethical turn. Jeff McMahan asks whether there is a good argument
for preventing the existence of a disabled person; not in cases where it could
be argued that the person’s life would not be worth living, but where it would
just be less good than it might have been. He argues, ”We have to acknowledge
that some people’s lives go better than others’. This is a judgment about the
contents of people’s lives, not about the people themselves”. And arguing like
this, he concludes that the choice against a disabled child ”is essentially
perspectival and does not necessarily imply or suggest that those disabled
people who actually do exist are unwanted or regarded as burdensome” (p. 152).
By contrast Adrienne Asch and David Wasserman come to a very different
conclusion. Of all the possible motivations for prenatal testing for genetic
disability, they criticize here the use of a stigmatized trait to stand for, and
effectively efface, the whole. What they call consumerist or perfectionist
reasons may display inflexibility or poor commitment to parenting, they argue,
but not ”the uncritical reliance on a stigma-driven inference from a single
feature to a whole future life” (p.181). This, they argue, is ”the sin in
synecdoche”. Although Asch and Wasserman end with their belief that most
decisions to select against impairment are misguided, they allow, with a nice
honesty, that they themselves ”remain uncertain at the margins”. And one of
the characteristic features of these debates is that so many cases lie at or
near the margins.

Tom Shakespeare’s chapter goes
further into the reality of socially embedded decisions. The resulting
complexity makes them seem quite different from the choices that are described
and analyzed by philosophers: ”…the sort of bioethics that is carried out by
women and men is an engaged and practical bioethics, rather than the balancing
of harms and benefits or arguments about principles” (p. 218). While defending
the overall moral acceptability of prenatal testing, Shakespeare criticizes existing
testing procedures in terms of their social context, and specifically the lack
of adequate and balanced information about future quality of life (and other
issues) for parents making prenatal testing decisions.

In a final chapter, Jerome
Bickenbach tracks the recent history of how disability is embedded, or not, in
the assessment of health systems worldwide. Focusing on the WHO framework of
assessment in particular, he criticizes it for its shift away from collecting
data on social determinants of health inequality in its assessments of systems,
noting the fact that ”there is empirical evidence that health inequalities
track income and other social inequalities” (p. 240). Arguing that disability
is at least in part due to social context, Bickenbach queries the framework’s
dependence on purely biological or biophysical limitation.

 In their introduction the editors
are at pains to note that the contributors bring different skills, and also
different experiences, to their analysis, and it’s not surprising they often
come to different conclusions. Yet there are also many concerns that they have
in common. A recurring motif is the need to challenge assumptions about the
direct connection between impairment and health, or between either of those and
whether a person can be said to flourish or not. Several authors make pleas in
this context for better resistance to stereotyping, and a greater pluralism in
the imagination of what makes a life ”go well”.   Again, the contributors
show widespread, though not absolute, agreement that disability must be conceptualized
as a function of environmental and social context as much as of biology, and
several authors address the question of developing ways to assess quality of
life that can cope with this.

Perhaps the most contentious issue
is the one about epistemological authority, and in this book it is not (and
perhaps could not be) resolved. If disabled and nondisabled people have
different evaluations of the quality of life in disability, which one is right?
Is ”right” in fact the appropriate word here? How much does the Anomaly
described by Amundsen and other contributors result from psychological
mechanisms for coping with disaster, and how much from the epistemic
consequences of a differently embodied experience? What the collection lacks at
this point is a deeper account of how socially standard (and hence powerful)
and marginal standpoints can be brought together, and what to do when they
conflict. That this is not simply an intriguing puzzle for epistemologists is
brought into focus by the opening sentence of Dan Brock’s chapter: ”The
principal goal of the Human Genome Project and other genetic research is to
increase our capacity to prevent or treat human disease” (p.67). Immense
amounts of time and money (and careers) are invested in these projects, and in
putting the resulting technologies to work in healthcare. What this book
demonstrates is the urgent need for greater clarity about the meaning of
concepts like ”disease” and ”disability”, about the relationship they bear
to achieving a good life, and about what we hope for in a good life in the
first place.

© 2006 Jackie Leach Scully

Jackie Leach Scully, Ph.D., Unit for Ethics in the Biosciences, University of Basel, Switzerland

Categories: Genetics, Philosophical, Ethics