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.

Categories: Genetics, Ethics