The Ethics of Genetic Screening

This collection of essays represents the work produced in the course of a three-year project funded by the Commission of the European Communities under the Biomed I programme, on the ethics of genetic screening, entitled 'Genetic screening: ethical and philosophical perspectives, with special reference to multifactorial diseases'. The short title of the project was Euroscreen, thereafter known as Euroscreen I, in the light of the fact that a second project on genetic screening was subsequently funded. The project was multinational and multidisciplinary, and had as its objectives to examine the nature and extent of genetic screening programmes in different European countries; to analyse the social policy response to these developments in different countries; and to explore the applicability of normative ethical frameworks to the issues. The project was led by a core group who had oversight of the project and members of which have acted as editors for this volume. Darren Shickle edited the first section; Henk ten Have the second; Ruth Chadwick and Urban Wiesing the third and final part. The volume opens with an overview of genetic screening and the principles available for addressing developments in the field, with special reference to the Wilson and Jungner principles on screening. The first of the three major sections thereafter includes papers on the state of the art in different countries, together with some analysis of social context and policy.

This book is a portrait of genetic screening that shows how the culture and history of a country determine the manner in which the science of genetics is viewed and the availability of particular clinical genetic services. At one extreme, in Germany, memories of the Nazi atrocities cause genetic counseling (and any other attempt to separate normality from abnormality) to be viewed with distrust. German geneticists are more likely than their counterparts in Portugal or the United Kingdom to counsel couples to continue affected pregnancies. In contrast, in the United Kingdom -- and even more so in the United States -- the "ethos of late capitalism" constructs the world of genetics as one of options and preferences, in which there is a reluctance to interfere with individual choices.

Much of the discussion of bioethics throughout the world focuses on defending one or another of these positions, to the neglect of understanding the experiences of people who are caught inside the screening net. This book is strongest when it turns to the impact of genetic screening on real lives. A child who undergoes genetic screening thereby loses the opportunity to make his or her own decision about testing later in life. A screening program for maple syrup urine disease among members of the Bedouin tribe resulted in male carriers marrying outside the tribe and female carriers being stigmatized, remaining unmarried, and being little valued. A Swedish screening program to identify children especially susceptible to lung disease from cigarette smoke so affected the families that the fathers of identified children ended up smoking more rather than less.

By demonstrating how genetic information affects people's lives, this book provides the background for asking numerous questions. For instance, how can a person's privacy and autonomy best be protected when genetic information about him or her can be collected and stored before birth? Should genetic analyses be done only in specifically licensed facilities? Are there certain forms of genetic technology that should be forbidden altogether? Are there others whose use should be mandatory? (All Greek Cypriots, for example, must provide proof of having undergone genetic testing for thalassemia before they can obtain a marriage license.)

The book is also strong when it holds a mirror up to clinical geneticists. Although most geneticists and counselors -- particularly in the United Kingdom, the United States, and Canada -- say they are nondirective, analysis of transcripts of actual counseling sessions found that counselors tell clients what is "best" for them an average of 5.8 times per session.

The data on patients and professionals in this book indicate a need to move beyond abstract bioethical discussions and toward a greater understanding of the decisions and actions of the participants in genetic health services. The medical, philosophical, and sociological perspectives presented in The Ethics of Genetic Screening are a useful starting point, but much more work needs to be done. Chadwick and Wiesing make the point well: "If an example of the need for multidisciplinary work was needed, the case of genetic screening would provide it. It shows again how practical ethics has to proceed if it does not want to become futile."

Lori B. Andrews, J.D.
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