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The Double-Edged HelixReview - The Double-Edged Helix
Social Implications of Genetics in a Diverse Society
by Joseph S. Alper, Catherine Ard, Adrienne Asch, Jon Beckwith, Peter Conrad, and Lisa N. Geller (Editors)
Johns Hopkins University Press, 2002
Review by Alex Sager
Jul 7th 2004 (Volume 8, Issue 28)

The Double-Edged Helix is a well-intentioned, but ultimately disappointing attempt to readdress issues of genetic discrimination, focusing on groups often neglected by the bioethical and social science literature. The authors belong to the Genetic Screening Study Group, which emerged from the Sociobiology Study Group which criticized the application of sociobiology to human behavior (particular E.O. Wilson's Sociobiology). The authors are particularly concerned with combating the simplistic genetic explanations of human traits and behavior that can have serious consequences in a world of economic inequality, racism, sexism and homophobia. They rightly affirm that science incorporates values that have a major impact on the research undertaken, its funding and its impact. Nowhere is this more evident than in genetics which raises difficult questions about scientists' moral and social obligations, the potential for discrimination and the violation of privacy, along with dilemmas concerning ownership, and human nature itself.

The collection opens with a useful article by Joseph Alper on the genetic complexity of human disease and behavior. Alper stresses the fact that traits – especially behavioral traits – involve complex interactions between genes and the environment. Jon Beckwith's article supplements Alper with a discussion of the dangers of genetic reductionism and determinism. Genetic reduction is the view that human health and behavior are ultimately explained in terms of genes alone, while genetic determinism suggests that altering the physical environment and social institutions will be futile. These doctrines are both false, as the case phenylketonuria (PKU), a genetic disease that causes severe retardation, demonstrates. Fortunately, when detected, PKU can be treated by a change in children's diets. PKU, a prototypical genetic disease, can be treated by manipulating the environment. Genetic reductionism and determinism can have serious consequences, for example, if policy makers use them to cut social programs on the grounds that inequalities are inevitable. Beckwith also tackles the history of eugenics, arguing that contemporary geneticists must speak-out against popular accounts proclaiming "it's all in the genes".

Peter Conrad's article about genetics and the media suggests that science reporting over-represents positive findings, presenting the public with a false "one gene, one disease" model that can have worrisome social consequences. As might be expected, the discovery of a "gene for x" (homosexuality, breast cancer, risk-taking, etc.) consistently receives less coverage than subsequent qualifications or disconfirmations. Furthermore, complex issues are often simplified, leading people to expect quick cures for diseases that may not exist. The media also neglects environmental and social analyses of problems, presenting the public with a misleading understanding of the issues.

The remaining articles address issues of genetic discrimination from the perspective of affected groups, including women, the gay and lesbian community, African Americans and other ethnic minorities and the disabled. Among the most interesting articles is Adrienne Asch's article about disabled advocacy groups. Currently, genetic screening mostly permits selective abortion for many genetic conditions (given that there is no cure). When it reveals Tay-Sachs, an incurable, lethal disease that causes neural generation and death by the age of four, there is a very strong case for abortion.  But there is also a great potential for abuse. For example, the discovery of "gay-genes" (chapter nine ably discusses this often misunderstood issue) might encourage the abortion of healthy individuals.

Leaving aside cases where potential parents act from clearly racist, sexist or homophobic motives, a large range of conditions require careful consideration. Unfortunately, many people believe disability involves constant anguish and impaired functioning, ignoring the fact that disabilities come in many forms, many which permit productive, fulfilling lives. Even conditions like Down syndrome, cystic fibrosis and sickle cell disease by no means prevent a high quality of life. Asch makes absolutely clear the need to take disabled people's perspectives and personal accounts very seriously, reevaluating our conception of "normality" and what consists of a decent life. Most importantly of all, we need to focus on non-genetic solutions to disability, for example, changing the work environment so disabled people can flourish. This reinforces the message running through the book: genes are only part of the story and often a minor part.

It is hard not to sympathize with the other articles, which deal with the experience of women, gays and lesbians, ethnic groups and the disabled. The aim of most of these articles is admirable, where the authors attempt to apply the tools of social science to increasing our understanding of diverse and important perspectives. Unfortunately, many of the articles fall short of really increasing our understanding, raising important points, but failing to scratch the surface.

One problem is that the open-ended surveys of some of the studies border on anecdotal. For example, C. Phoebe Lostroh and Amanda Udis-Kessler's article "Diversity and Complexity in the 'Gay-Gene' Debates" involved sending sixty opened-ended surveys, which seem to establish what we already know: the gay/lesbian/bisexual/transexual/transgendered community is diverse and people within it have varied views about the existence and social consequences of a "gay-gene". The sample size is simply too small and the analysis too shallow to contribute much to this debate.

The same is true of the multi-authored case study analysis of genetic discrimination (Chapter 12). The authors themselves admit that their study is limited, included self-selected members with little documentation to back up their claims. Genetic discrimination is a major issue, especially the concern that insurance companies will want to use genetic testing to deny at-risk individuals insurance. But without a larger sample and a more detailed, documented analysis of cases of discrimination, the article leaves us where we started, with a conviction that it happens, but not how frequently, seriously or why. Above all, we are left with little idea of what to do.

By now, there is quite an extensive literature on the potential dangers of genetic research and its applications (Philip Kitcher's The Lives to Come stands out as an accessible, but scientifically and philosophically informed introduction). While much of it raises real concerns, there is remarkably little in way of concrete solutions for dealing with genetic discrimination. For example, Catherine Ard and Deborah Zucker mention many of the concerns surrounding commercialization of genetic technologies, but end by noting "the difficulty in finding a balance between government involvement, active public involvement, and the commercial sector—particularly when technology capability outpaces policy making (242)." This is obviously true, but unhelpful and typical of many of the articles, I believe.

It is possible to be too critical, since education is certainly called for and books like The Double-Edged Helix have an important role. But concrete analyses of health-care institutions, government policy and actual scientific practice are also needed, something which the social sciences should provide. We have reached a point where many of the problems have been identified and need to move towards a solution. Readers who are new to issues concerning genetic discrimination and its surrounding problems will find that The Double-Edged Helix is a useful introduction. But readers already familiar with the issues may be left unsatisfied, demanding more.

 

© 2004 Alex Sager

 

Alex Sager is a doctoral candidate at L'Université de Montréal working on the ethical implications of biotechnology and public policy.


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