The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...) large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights, Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”. (shrink)

As in other areas of medical practice, relatives accompany patients to genetic consultations. However, unlike in other areas, the consultations may be relevant to the relatives’ health because they may be at risk of developing the same genetic condition as the patient. The presence of relatives in genetic consultation may affect the decision‐making process and it raises questions about the perception of patient autonomy and the way it is practiced in genetics. However, these issues have not been examined in previous (...) empirical studies. This article aims to fill this gap by reporting findings from a qualitative study with clinicians working in the area of inherited breast cancer. The findings indicate that family presence has an impact on the patient's decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier. The findings further indicate that, unlike in other areas of medical practice, blood relatives who are present in consultations are perceived by clinicians as patients or potential patients, and this in turn increases their involvement in discussions in the consultation room. Finally, the findings indicate that in genetics, a relational approach to autonomy is applied. Decisions are made in a social context, where the relatives’ views are heard and taken into account. The findings suggest that the conventional bioethical approach to autonomy, which perceives the decision‐making unit as comprising a clinician and an individual patient, is challenged in genetics. The findings thus suggest that bioethicists, lawyers and policy‐makers should consider whether this individualistic approach is still valid and applicable. (shrink)

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human genetics. He (...) challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine. (shrink)