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Last Updated: 04/23/21

Ethical, Legal and Social Implications of Biobanking in Cancer Research

Photograph of doctor and patient

The ethical, legal, and social implications (ELSI) of cancer research are increasingly complex and require careful attention from researchers, especially when biological samples and associated data are collected for potential genetic or genomic studies. Protecting the rights and welfare of biospecimen donors involves ethical considerations as well as regulatory compliance. Researchers should be aware of best practices in the following areas:

  • Biobank governance and custodianship obligations
  • Engagement of research participants as partners, and respectful engagement of research communities
  • Models of consent for secondary and future research uses of collected biological samples and genetic data
  • Researcher access to potentially identifiable information
  • Promoting data sharing and data security
  • Return of research results and incidental findings

Explore the following resources for more information on ELSI related to cancer research and biobanking.

The ENRICH Forum

NCI’s ENRICH Forum (Ethical aNd Regulatory Issues in Cancer ResearcH) invites speakers to discuss critical, timely and often controversial ELSI issues involved in cancer research. Sessions are open to the NIH community and to the public, via webinar. ENRICH programming is designed to encourage dialogue around ethical and regulatory topics and promote awareness of developing policies and best practices.

The ENRICH Forum is sponsored by the Division of Cancer Treatment and Diagnosis (DCTD) and the Division of Cancer Control and Population Sciences (DCCPS). To see the schedule of upcoming webinars, or view recordings of past Forums, please visit the ENRICH website.

For Researchers

Federal requirements to protect human subjects apply to most federally funded or sponsored research that uses human specimens, residual diagnostic specimens, and medical information. The following resources can help you understand what these regulations mean for researchers.

For Patients and Advocates

Federal requirements to protect human subjects apply to most research that uses human specimens, residual diagnostic specimens, and medical information. The following resources can help you understand what happens when patients decide to participate in cancer clinical trials and donate their biological samples and data.

Archived Resources