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The Troubled Helix: Social and Psychological Implications of the New Human Genetics
  1. Anneke Lucassen
  1. Consultant in Clinical Genetics and Honorary Senior Lecturer, University of Oxford and Imperial Cancer Research Fund

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    Edited by Theresa Marteau and Martin Richards, Cambridge, UK, Cambridge University Press, 1999, 359 pages, £18.95/US$29.95 (pb).

    This excellent compilation of essays covers a broad range of genetic topics and is a must for anyone interested in the ethical, social, legal, and historical perspectives of human genetics. This is not a new edition but a paperback version of the 1996 edition. The book begins with a section on “the voices of family members whose lives have been deeply touched by genetic disease”. There are ten very moving accounts of individuals' experiences of a range of different genetic conditions and of genetic testing. These accounts will convince anyone that the issues involved when considering genetic testing are complex; they show clearly why such testing is different from many other medical tests.

    In the second section, on the clinical context, there are some very thorough reviews of the literature on research into the theories of genetic counselling and on interpretations of risk. This highlights how little we really know about how decisions are reached in particular areas, such as family planning, prenatal diagnosis and predictive testing in the context of genetic conditions, and also the difficulties of research aimed at improving how we communicate.

    The psychosocial aspects of carrier testing and of prenatal diagnosis are considered and the pros and cons of genetic testing of children are discussed in detail, with each of the arguments laid out in a balanced way.

    The book's third section considers the social context of the new human genetics.

    There is a chapter summarising the legal aspects, for example, the law regarding genetic information and privacy (does genetic information belong to an individual or to the whole family?), a very interesting chapter summarising the eugenic movement, and two equally interesting chapters which consider the public understanding of genetics. The latter demonstrate how the popular perceptions of kinship can be very different from those of geneticists.

    At a time when most textbooks on genetics rapidly become out of date, this book has aged very well. The authors admit they have changed very little text for the paperback edition and that most is the original 1996 version. Although there have of course been major developments in the field of genetics in this time, there have been very few fundamental changes to the clinical practice of genetics and the arguments surrounding the implications remain as valid today as they were in 1996. The book is highly recommended for both general readers and specialists.

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