What consideration has NCI given to ethical, legal, and policy issues related to biorepositories?
In addition to technical considerations, ethical and legal issues also affect the quality and accessibility of biospecimens for research. The NCI recognizes the importance of respecting research participants who contribute biospecimens and is committed to ensuring that research participants are fully informed about research activities and that all necessary privacy protections are in place. Application of the highest possible ethical standards is necessary to ensure the support and participation of patients, physicians, researchers, and others involved in biorepository activities (NBN Blueprint 2003). Over the past 10 years, NCI has participated in, and supported, many meetings and workshops that address the issues associated with collection of biospecimens from human subjects. Forums have included events convened by NCI, Food and Drug Administration (FDA), International Society for Biological and Environmental Repositories (ISBER), and Public Responsibility in Medicine and Research (P
