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Cancer Diagnosis Program (CDP) — Biorepositories & Biospecimen Research Branch (BBRB) Cancer Diagnosis Program (CDP) Biorepositories & Biospecimen Research Branch (BBRB)
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Last Updated: 09/20/17

Ethics in Biobanking

As use of human biospecimens in research and diagnostics continues to grow, it is increasingly important to consider and address the ethical, legal, and social implications (otherwise known as ELSI) of biospecimen collection and research activities. Key ethical issues in biobanking include:

  • Respecting research participant autonomy
  • Informed consent
  • Ethical considerations for return of results
  • Data privacy and donor confidentiality
  • Data storage and consent
  • Diversity in biobanking to promote equity

NCI and BBRB are committed to promoting ethics in biobanking through various programs and initiatives. BBRB has worked to harmonize and develop ethical guidelines for access to biospecimen and associated data and has collaborated nationally and internationally to keep pace with evolving ideas around biospecimen resource governance. A culmination of these efforts can be found in NCI's Best Practices for Biospecimen Resources. Additionally, BBRB and NCI have convened several workshops to identify key recommendations relevant to ethics in biospecimen collection, dissemination, and use in research. BBRB has also incorporated several ethics studies and strategies in initiatives such as the Genotype Tissue Expression (GTEx) project and the Biospecimen Preanalytical Variables (BPV) program and developed a new Patient Corner area focused on biobanking ethics.

Please click below for more information on BBRB's efforts to promote ethics in biospecimen collection, storage, dissemination, and use in research:

Past Workshops on ELSI and related issues

Complementary programs and other resources