Amedeo Santosuosso is professor of Life Sciences and Law at the University of Pavia. He served as a judge at the Court of Milan from 1978 to 2004 and in 2004 he was appointed judge at the Milan Court of Appeal. Since 2001 he has taught a course on New Aspects of Personal Freedom at the Faculty of Law, State University of Milan. He is President of the European Centre for Life Sciences, Health and the Courts, of the University of Pavia (http://www.unipv.it/ECLSC). Since 1997 he has cooperated with the Scientific Committee of the Italian Consiglio Superiore della Magistratura (Supreme Council of the Judiciary) in teaching and organizing courses on biotechnology and bioethics. He is author of the project Education in Bioethics, approved by the same Consiglio (November 1998). Professor Santosuosso has been a member of the Commission on Hydration and Nutrition in PVS Patients (Italian Ministry Health 2000) the Commission on Transplants from Living Donors (Ministry of Health 2001, the Commission on End of Life Decisions (Ministry of Health, 2007) and the Commission on Frozen Embryos (Ministry of Health, 2007). He has written numerous essays on fundamental rights and patients' rights in relation to technology and genetics. His books include Corpo e libertà. Una storia tra diritto e scienza, Raffaello Cortina Editore, Milano 2001; Bioethical Matters and the Courts: Do Judges Make Law? Notizie di Politeia, N65, 2002 and main author of Science, Law and the Courts in Europe, Ibis, Como-Pavia (I), 2004. He edited the book Neuroscience and the Law (Le neuroscience e il diritto), Ibis, Como-Pavia (I), 2009. Professor Santosuosso is also author of several articles published in journals on law and bioethics; those in English include: Â§ A. Santosuosso et al., What Constitutional Protection for Freedom of Scientific Research? J Med Ethics.2007; 33: 342-344 Â§ A. Santosuosso, V. Sellaroli, I. Pavone, Drawing the Boundary Lines of Humans: in Whose Bailiwick? Derecho y ReligiÃ²n, vol. II, 2007, 11-36 Â§ V. Sellaroli, F. Cucca, A. Santosuosso, Shared Genetic Data and the Rights of Involved People, Law and the Human Genome Review, No. 26 January-June 2007, 193-231 Â§ A. Santosuosso, The Worldwide Law-Making Process in the Field of Science and Law: a Laboratory Bench (IBLARC), Journal of International Biotechnology Law, Vol. 06, I, 2009, 1-11. Professor Santosuosso is currently working on worldwide aspects of the law-making process as it applies to the application of scientific developments to human beings.
Should privacy be abolished in genetics?
The concept of privacy has expanded as innovations in technology have made it possible to render public what was previously out of the public view. Initially it was photographs and newspapers that “invaded the sacred precincts of private and domestic life” (Warren and Brandeis, 1890). In recent decades, other developments have complicated and enriched the concept of privacy. The right to privacy as a right to self- determination in choices regarding individual life and medical treatments (use of contraceptives, abortion and end-of-life decisions) has grown up from the extraordinary development of biological sciences and medicine. The idea of informational privacy stems from information technology, which makes it possible to collect, store and access of huge quantities of data (including medical and health data) on individuals. Questions of informational privacy include whether people have any ownership rights to information held about them and whether they have a right to view, verify, and challenge that information.
We see that the individual’s legal dowry is widening gaining new ground, as new aspects of a person’s sensitivity, personality, ideas and interests are perceived to come under threat and require legal protection.
This individualistic approach works well in areas where the individual can be considered an isolated entity, independent of society. However this approach leads to paradoxical consequences when applied to genetics, which is the domain of familiarity of heritable characteristics.
The idea that individuals have the right to decide about and control their biological information is not under discussion. But what about when information is genetic information about characteristics shared by a biological group? Should each member of the group be entitled to interfere with the lives of other members of the group? And how should the extent of the biological group be determined? Should it date back to a common ancestor? If not, where do we draw the boundary line, and using what criteria? Drawing such a line is essential today for we want avoid, on one hand, abuse of personal information and, on the other, paralysis of scientific research.