ABSTRACT

Internationally and regionally, legal and ethical instruments acknowledge the sensitivity of genetic material. While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more. Taking the issues raised above in turn, it is clear that consent is key both to the future uses of samples archived after medical care and to the possible secondary uses of research samples. In regards to samples and data collected for a specific research project that are to be used subsequently for other research purposes, the Council for International Organizations of Medical Sciences specifies that subsequent research be circumscribed by the original consent, and that any conditions specified in that initial consent apply equally to secondary uses. The position that human genetic research databases are global public goods, however, serves to place new sequences and information into the public domain.