What consideration has the NCI given to ethical, legal, and policy issues related to biospecimens?
The NCI is highly focused on ethical, legal, and policy issues related to biospecimen resources. In 2005, the NCI convened a landmark workshop that brought together diverse representatives from the cancer research community as well as ethics, legal, and policy experts to discuss and propose approaches that could help unify, integrate, and improve biospecimen resource activities. The recommendations from this workshop, as well as additional NCI-sponsored meetings and work conducted between 2002 and 2005, formed the basis of the NCI Best Practices, which includes recommendations for biospecimen resources in the areas of custodianship, informed consent, privacy protection, access to biospecimens and data, and intellectual property and resource sharing. In October 2007, the NCI Office of Biorepositories and Biospecimen Research held a symposium-workshop, “Custodianship and Ownership Issues in Biospecimen Research,” (link to workshop summary) to define the parameters of custodianship that w
