Innovations in genetic health technologies bring about a whole set of social responses, from informed concerns on privacy and confidentiality to fears of a resurgence of eugenics. The many benefits that are announced as forthcoming by governments and pharmaceutical companies are thus joined by fears, scepticism or simple misinformation. Reconfiguring Nature offers a series of qualitative studies on the appraisal of advances and ongoing research, with their promises and risks. It proves the value of social scientists' insights as the field of health genetics develops. Its main point seems to stress the need for further efforts in understanding misconceptions and communication failures from all parts involved. Reflections from the cases presented in this book can help improve not only professional guidelines but also the public understanding of related issues.
New genetic technologies have sparked heated public debates on food and crops, with strong scepticism in Europe and apparent acceptance in the United States. Other issues, like cloning or criminal DNA fingerprinting, also incite ongoing discussions about uses and regulation for the application of current technological developments. Health matters, however, tend to receive more positive press coverage due to hopes of better treatments for a variety of diseases. As several authors in this volume show, however, such optimism is not a clear-cut acceptance of all that the studies entail.
The fast pace of scientific advancement in these technologies and the many areas involved in research make it hard for health care professionals or others concerned to be well informed about potential implications. Most of the guidelines to which experts must abide when dealing with genetic research were originally designed for different matters, such as medical treatment or diagnosis. Furthermore, it may be the case that when interdisciplinary teams work on a project, each member is governed by a different set of guidelines with contrasting measures regarding the use of biological samples in research. Such would be the case, for example, of the guidelines drawn up in the UK by the Medical Research Council, the Royal College of Physicians of London and the Royal College of Pathologists (p. 113).
The fourteen chapters of the volume are divided in five parts, each dedicated to a sensitive issue area around what is termed ‘new genetics’: 1) literacy, public understanding and the media; 2) commercialization and health; 3) ethics regarding human genetic banking; 4) genetic screening; and 5) cloning and xenotransplantation. The introduction by Glasner and Rothman offers an overview of how the debates on genetics have developed since the early twentieth century, which paves the way for the debates portrayed in each chapter. By reviewing the discussions around scientific endeavours on genetics and their philosophical implications, they shed light on how the eugenics agenda ‘refuses to leave the stage, and veils itself in the pervasive notion of free individual choice’ (p. 10). In the conclusion, Glasner stresses the worth of social scientific approaches in order to ‘facilitate communication between experts, practitioner and social groups given the many misconceptions about the implications of the new genetics that abound even in specialist circles’ (p. 314). Thus, researchers' insights into situations of conflict and concern are not only important, but also necessary.
Several chapters touch on the normative frameworks that underpin genetic research and the implication of individuals as donors. Existing directives and conventions are useful, but tend to be too dispersed to reach those working outside the medical profession, especially regarding pharmaceutical research. Legal frameworks, therefore, are lacking in achieving a more comprehensive control towards more certainties and less ambiguities. It is the case, however, that at this point in the complex developments of the field, there are more questions than answers regarding the many issues involved (p. 128), such as the ownership of genetic information, confidentiality and privacy in the use of databases and informed consent, among others.
This volume, therefore, proves to be a significant addition to a field that is growing in social and economic relevance. Issues such as stigma or discrimination do not disappear with objective scientific data, as the chapter on predictive medicine and schizophrenia illustrates (p. 56–79). Exploratory research into the potential benefits of predictive medicine thus requires additional measures such as counselling. A tension between private and public interests therefore lies at the core of debates, as pharmacogenetics gains terrain and uses public studies from universities or hospitals. Each of the issues depicted in this volume deserves careful scrutiny in order to ensure desirable developments and a useful framework for all stakeholders and professionals, as well as for the improvement of the public understanding of these issues.
