Ethical, Legal and Social Implications (ELSI) Related to Biorepositories and Biospecimens

NCI has participated in, and supported, numerous meetings and workshops to address issues associated with collection of biospecimens from human subjects. Forums have included events convened by NCI, Food and Drug Administration (FDA), International Society for Biological and Environmental Repositories (ISBER), and Public Responsibility in Medicine and Research (PRIM&R). For information on ethical, legal, and policy challenges in biospecimen research please visit:

• NCI ELSI Workshop Summaries
• Informed Consent Regulations and Guidelines
• The Protection of Human Subjects (Common Rule)
• ELSI Resources related to biospecimens, data collection and sharing
• Secretary's Advisory Committee on Human Research Protections (SACHRP)
• 2011 Genetic Privacy Laws 50 State Survey
• Donor Privacy and Confidentiality Protections
• Guiding Principles for Custodianship of Donated Biospecimens
• Who Can Access Donated Biospecimens and Data?

For ELSI, patient advocacy resources, multimedia, and more click here

Read our patient education booklet on providing tissue for research in clinical trials. To order copies of this brochure visit the NCI Publication Locator.

You can also view our video to hear from patients and researchers about the importance of your donated tissue.

Habla Español? Aprenda mas sobre el cancer y cómo contribuir a la investigación médica con su donación de sangre y otros tejidos aquí.

To find out more, visit our Frequently Asked Questions (FAQs)