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:
- Genotype Tissue Expression (GTEx) project: Ethical, Legal, and Social Implications sub-study
- Biospecimen Preanalytical Variables (BPV) program: Ethical, Legal, and Social Implications sub-study
- BBRB Patient Corner: Ethical, Legal, and Social Implications Related to Biorepositories and Biospecimens
Past Workshops on ELSI and related issues
- Custodianship and Ownership Issues in Biospecimen Research
- BBRB Think Tank on the Identifiability of Biospecimens and “-Omic” Data
- International Harmonization of Biorepository Practices symposium
- Release of Research Results to Participants in Biospecimen Studies
- The Ethical Use of Pediatric Biospecimens in Research