B O O K R E V I E W S

Common threads in strands of inquiry about the 'troubled helix'

The Troubled Helix: Social and Psychological Implications of the New Human Genetics edited by Theresa Marteau and Martin Richards

Cambridge University Press, 1996. £35.00 hbk (359 pages, including index) ISBN 0 521 46288 6

The Troubled Helix constitutes a refreshing and valuable contribution to the literature on the social, psychological and ethical implications of developments in human genetics. The volume distinguishes itself from many of the recent books on similar themes, most especially by its sustained attention to patient, lay aod public perspectives, and by the undedying conceptual and methodological commitments that serve to unify its 17 chapters. Those commitments are reflected in the statement in the Preface that The Troubled Helix intends 'to indicate not only ways in which our social wodds are dtanged by molecular genetics but also how the research and practice of the new genetics has been shaped by the wodd in which it has been developed' (pp. ~'-.'e,'i). Although the statement refers most directly to the third part of the volume, 'Social Conies', the entire interdisciplinary book explores the s3'nergy between scientific and extrascientific practices, and critically examines the alleged boundaries between the two realms (scientific attd lay communities, the professional and the public).

The final line of the preface states that "this book represents a start in providing a social perspective on what molecular .scientists have crt~ted ' (p. xvi). This is an accurate, albeit somewhat modest assessment of the ovm'all aims of the book. Molecular sciemists e~sentially create, not merely discover. They identify genetic variations worthy of attention, and construct and classify disease and disorder. They create risks, for example, of disease (healthy ind;viduals can now be 'at risk' for conditions that previously befell those afflicted without warning). And, as a consequence given the current .social context, they create ~sks of discrimination, stigma, anxiety and guilt.

The book opens with personal accounts of individuals' experiences with genetic disorders, specifically,

Huntington disease, heredita%' breast and ovarian cancer, Werduig-Hoffman syndrome, and sickle cell conditions. These bring to life the myriad ways that individuals experience the genetic, psychological, social and economic risks as.scx_'iated with genetic testing and counseling, risks that too many articles and Ix.,oks on the ethical implications of genetics discuss in abstract, sanitized terms. To test or not? To exercise the right to know or the right not to know? These accounts vibrandy express in first person voice how genetic information, or the possibility of knowing it, affects familial interactions, life plans, self- concept and preventive health ,behaviors. This is the stuff that health belief models and assessmen~ of well-being seek to me.)sure..~s the Introduction to the first part of the book suggests, t h c accounts do not clain~ to be fully representative, but neither should quantitative studies that sacrifice capturing the diversity of responses for the sake of achieving statistical significance. This statement by Martin Richards, one of the editors, is indicative of the broad scope of the boc~k and its methodological commitment to mapping the terrain oL rather than measuring, the social effects of molecular gene~ics.

The third part of the book explores the social context of molecular genetics. In addition to more typical chapters on ethical and legal concerns, as well as a critical examination of the histoty of British eugenics, this section addresses fundamenta! concepts, such as family and kinship, and ethnicity and race. Several chapters explicitly consider the social construction of such concepts and of the process and subject matter of genetic testing, counseling and decision making The chapter on feminist perspectives, for example, notes that reproductive decisions are not free, but are 'informed by the beliefs and ideas of the society, which influence both confurmists and

rebels who both suffer social and economic constraints' (p. 340).

Most representative of thL~ section, and of the conceptual framework of The Troubled Helix; ~ the chapter on the 'public understanding of the new genetics'. Its authors assert that 'public' is, itself, a social construct, and that public understandings of genetics are not merely inadequate reflections of professional understandings, but "products of multiply mediated historical and cultural... influences' (p. 236). The balance of the chapter, indeed of the book, persuasively argues that these multiple understandings of genetics and its contexts must be taken ,seriously and accommodated if we are to benefit from, rather it+an to suffer under, the 'new' genetics.

The middle section of the book illuminates the social construction of the options genetics affords in the clinical context. Here, the chapters more closely resemble traditional treatments of carrier and prenatal screening, the pros and cons of screening children, and the challenges of genetic counseling. However, the emphasis remains on the social context of these practices, their psychological effects, and the need for additional research imo both. Indeed, the chapters on genetic counseling and decision making set out excellent programs for future research, The latter provides a superb review of work done so far on genetic risk while recognizing the muhidimensional nature of the concept itself.

Scholars of science studies should find this volume quite valuable; geneticists and other interested readers should not be intimidated by the conceptual commitments of The Troubled Helix and will find the essays interesting and accessible. The Troubled ltelix provides discussions of psTchological impact not collected elsewhere - researchers, clinicians and polio/makers should benefit from such increased understanding. The volume's collective treatment of the social context and construction of our understanding of genetics has ramifications that will extend beyond this current era of 'new' genetics.

Lisa Parker lsp@med.pitt.edu

Department of Human Gtmetics and HP$ Graduate Sc,~ool of Public Health, Unitersit.i' of Pittsburgh, 130 De Solo Street, Pitlsburgh,

PA 15261, USA.

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TIG DECEMBER 1996 VOL. 12 NO. 12

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