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Quality of Life and Human DifferenceReview - Quality of Life and Human Difference
Genetic Testing, Health Care, and Disability
by David Wasserman, Jerome Bickenbach, Robert Wachbroit (Editors)
Cambridge University Press, 2005
Review by Jackie Leach Scully, Ph.D.
Jul 18th 2006 (Volume 10, Issue 29)

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


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