A personal responsibility to disclose genetic information A personal responsibility to
disclose genetic information is more Tariquidar supplier permissive in describing what we expect to happen in family AZD8931 mouse relationships, as opposed to a legal obligation, which is more about what we require. In this instance, it permits a patient to decide what, to whom, when, and how to disclose information that could have an impact on the health of a family member, as well as on the family member’s relationship with the patient. The familial context of each patient is different (Wiseman et al. 2010), and a personal responsibility recognizes this. This responsibility has adherents in national and international guidelines and policies that promote patient disclosure of genetic risk to their families. Although these are often not detailed, they are a starting point for discussion. In Germany, a personal responsibility to communicate genetic risk is explicit. “A moral obligation of family members to share their knowledge of their genetic makeup can be seen, as well as a moral obligation of partners to inform each other of their medical genetic problems, insofar as the latter concern children they may have in common” (German Society of Human Genetics 1998). France also takes a more explicit view of the obligation GW3965 nmr of patients. The National Consultative
Ethics Committee for Health and Life Sciences makes clear that the patient has the moral responsibility (though not the legal) to disclose pertinent information to those who could benefit (France National Consultative Ethics Committee for Health and Life Sciences (CCNE) 2003). In the UK, the General Medical Council recognizes that most patients will share genetic information with relatives if properly advised of the health implications of the
information (General Medical Council 2009). The Nuffield Council on Bioethics is clear that patients “acting responsibly would normally wish to communicate important genetic information to other family members who may mafosfamide have an interest in that information, and… that the primary responsibility for communicating genetic information to a family member or other third party lies with the [patient] and not with the doctor who may, however, do this at the request of the person concerned” (Nuffield Council on Bioethics 1993). This statement places responsibility for disclosure solely with the patient, though it does not provide further direction as to how and when patients should do so. Finally, the Joint Committee on Medical Genetics recently released guidance on consent in genetic practice, emphasizing the importance that genetic information might hold for family members and recognizing the patient as a potential source of the disclosure (Royal College of Physicians et al. 2011). Other guidance implies a responsibility for patients to inform family of risk.