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5.0 out of 5 stars
1
5.0 out of 5 stars

on 13 August 2002
If you are interested in the Human Genome, and want to separate the hype about new genetics from what is actually being delivered, this book will go a long way towards giving you an informed opinion. It looks at some of the assumptions that underpin genetic technologies (eliminating "deformities") and asks is this the type of society we want to have - where human difference is devalued and eradicated?
The book covers a wide range of areas, from the eugenics associated with "public health" in Nazi Germany, to the "public health" programs in democractic countries which have encouraged pregnant women to be screened for (and abort) a disabled foetus. In such a context, arguments that genetic counselling is non-directive are "a myth". Powerful social and cultural forces, as well as economic interests, undermine the autonomy and reduce the "free choice" of pregant women who are carrying babies with hereditary genetic diseases.
Kerr and Shakespeare cast a critical eye on the science industry, and its sometimes spurious claims of a biological basis to all human activity. For instance, they criticise scientific arguments about a "gay gene" because of its bioloigical determinism and problematic use of twin studies. The authors acknowledge that genes are important, but they stress that both genes and the environment interact in shaping human behaviour. In this context, the social dimensions of health are acknowledged as important.
The argument of this book is complex and fascinating: the authors are not anti-science. They argue that science can and has made an important contribution to human welfare. For instance, they stress that the Human Genome Project has significantly contributed to gene identification in diseases. However, they argue that a social and ethical perspective is vitally important in debates around genetic politics. For instance, one cannot have a balanced debate about aborting a disabled foetus without including disabled people in the debate. Likewise, although certain genetic conditions are incredibly difficult to experience and may have symptoms which are treated well with drugs, Kerr and Shakespeare also argue for social solutions to social problems (such as alcoholism). They stress that we must not engage in biological reductionism, and reduce all social experiences to the level of the gene.
New genetics raise an array of important questions about access to genetic knowledge and information, the value of such knowledge when the genetic condition cannot be treated, confidentiality of data and the possibility of discrimination, and the difficulty understanding genetic risk. This important new book makes a significant contribution to raising awareness of these issues. I would thoroughly recommend it for use in a wide range of educational settings, including the sociology of science and technology, medical sociology and disability studies.
Scientific progress can advance so quickly that all the ethical dimensions of genetics need to be considered sooner, rather than later.
Another interesting point which is made in this book is that genetics and eugenics cannot be easily disentangled. The history of eugenics, shows that the changes over time are not as distinct as some people may believe. The modus operandi has changed over time, but there are still significant links with the horrid practices of the past which led to the deaths of thousands of disabled people.
In Nazi Germany, the experience of eugenics involved the large scale sterilisation, euthenasia and ultimately genocide of appromiately 75,000 people, via the T-4 program. Although Kerr and Shakespeare avoid simplistic parallels between Nazi Germany and contempoiary democracies, they highlight the eugenic underpinnings of the sterilisation programs which occured in the UK, USA, and the Scandinavian democracies. Changes in medical practice have led to the "privatisation" of eugenics. Rather than working at a population-level, eugenic thinking now has its place in a private sphere, where pregnant women are counselled to think about the desirability of having babies with hereditary impairments and abortion of disabled feotuses is presented as a "solution" to this issue. Such counselling is not "non-directive", the authors argue. Instead, it is skewed twoards abortion.
Throughout this book, Kerr and Shakespeare emphasise that the idea of separating "good genes" from "bad genes" is deeply problematic. Yet such an assumption is the basis of a great deal of current scientific endeavour, from the Human Genome Project to the research being funded by the pharmaceutical industry.
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