Science historian and sociologist Ruth Schwartz Cowan offers the reader an account of the history of genetic screening. From its early development, when the field of genetic medicine was nearly compromised by the parallel practice of eugenics, Heredity and Hope: The Case for Genetic Screening brings us forward to the present day, to examine many of the difficult issues that the various stakeholders – doctors, patients, parents, legislators, business leaders, and citizens – must grapple with. The author traces the development of screening for several hereditary diseases – including Tay-Sachs disease and phenylketonuria – and confronts some of the criticisms these programmes have received over the years. A separate chapter of the book considers the case of Cyprus, where the only mandatory premarital genetic screening policy in the world exists (for the genetic defect that causes beta-thalassemia). The author, arguing that pre-and post-natal genetic screening is “morally right and politically acceptable” is herself a recipient of amniocentesis testing. It is thus from personal experience that she that evokes the existential questions the choice of whether or not to undergo genetic testing can awaken:
We must think deeply about our most intimate, emotion-laden relationships, the ones we usually push to the back of our consciousness just to be able to get through the day: relationships between sexual partners, between spouses, between parents and children. The decisions we make about genetic testing depend on our answers to questions on which even philosophers and theologians disagree. What is a good life? What is a good parent? What is good health—and how important is it? What does it really mean to love a foetus, a child, a spouse, yourself? ...Of course these are not just personal questions; they are social and political questions as well.
Arguing that quality of life can be vastly improved via the responsible use of genetic screening, the book nonetheless calls for the development of guidelines that will help navigate decision-making processes inherently involved in genetic testing.
Heredity and Hope: The Case for Genetic Screening
Ruth Schwartz Cowan
Harvard University Press 2008
ISBN 13: 978-0-674-02424-3
