View Video Duration: 1 hour 41 minutes
Prof. Capron discussed how biobanks — repositories of human biological samples and associated information about the lives and health of the samples' sources — have been established to assist in studies of particular diseases and, more broadly, of the effects of genes and the environment on human health and disease. Many involve collaboration across boundaries, including the gathering of samples in developing countries (sometimes from culturally isolated populations) by researchers from developed countries. He suggests that biobanks, therefore, raise many difficult normative issues:
- From whom must permission be obtained to collect, store, and use samples?
- Who should control the biobanks and the samples they hold?
- On what terms should samples be made available for research?
- How should the benefits of research be shared?
Although numerous ethical codes and guidelines have been promulgated, significant questions remain about their effectiveness. Prof. Capron also analyzed the methodology and results of an international study of expert opinion on such issues and offered his reflections on how we might think about these controversies.