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Last Updated: 10/04/17

Ethical, Legal and Social Implications of Biobanking in Cancer Research

Photograph of doctor and patient

The ethical, legal, and social implications of cancer research (ELSI) are increasingly complex and of paramount concern in the genomic era. Protecting the rights and welfare of human research participants involves moral considerations as well as regulatory compliance. Researchers should be aware of best practices and policy options in the following controversial areas: The collection, storage and future research use of biological samples and genetic data; researcher access to potentially identifiable information; appropriate consent and community engagement, data sharing models, and the return of research results and incidental findings.

For Researchers

Federal requirements to protect human subjects apply to most research on human specimens, residual diagnostic specimens, and medical information. The following resources can help you understand how federal regulations apply to your research.

For Patients and Advocates

Federal requirements to protect human subjects apply to most research on human specimens, residual diagnostic specimens, and medical information. The following resources can help you understand how federal regulations apply to your research.

The ENRICH Forum

NCI's ENRICH Forum is sponsored by the Division of Cancer Treatment and Diagnosis (DCTD) and the Division of Cancer Control and Population Sciences (DCCPS) The Forum invites speakers to discuss specific ethical, legal, and social issues affecting cancer research. Webinars are open to the public as well as the NCI research community, and are designed to stimulate dialogue on ethical and regulatory issues in cancer research and promote awareness of developing policies and best practices. For information on past and upcoming webinars, please visit the ENRICH website.