Many important advances in human health depend on the effective collection, storage, use, and sharing of biological specimens and their associated data. However, recent controversies involving specimen-based research have raised important questions about ownership, data-sharing, privacy considerations, group harms, and standards for responsible specimen stewardship.
This symposium addressed key ethical and policy issues raised by genetics and other research involving human biological materials, covering the entire trajectory from specimen source to new discovery. The experts at this day-long event covered key topics, such as historical, legal, and international perspectives; donor attitudes, researcher perspectives, and institutional considerations; broad vs. specific informed consent; privacy, ownership, and control; use of specimens collected through mandatory newborn screening; research with discrete and insular populations; and others. Conference papers will be published as an edited volume by MIT Press in 2017.
Welcome from Coorganizers:
- I. Glenn Cohen (Petrie-Flom Center, Harvard Law School)
- Holly Fernandez Lynch (Petrie-Flom Center, Harvard Law School)
- Barbara Bierer (Harvard Catalyst and MRCT Center of Harvard and Brigham and Women's Hospital)
- Suzanne Rivera (Case Western Reserve University)
- Elisa Hurley, PRIM&R (and Kimberly Hensle Lowrance and Avery Avrakotos) - Research with Biospecimens: A Brief History
- David Peloquin, Ropes & Gray LLP (and Barbara Bierer and Mark Barnes) - Legal Considerations and International Perspectives
- Karen J. Maschke, The Hastings Center - Governance Issues for Biobanks and Biospecimen Research
- Moderator, Aaron S. Kesselheim, Harvard Medical School
This event was a collaboration between The Center for Child Health and Policy at Case Western Reserve University and University Hospitals Rainbow Babies & Children’s Hospital; the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School; the Multi-Regional Clinical Trials Center of Harvard and Brigham and Women's Hospital; and Harvard Catalyst | The Harvard Clinical and Translational Science Center. It was supported by funding from the National Human Genome Research Institute and the Oswald DeN. Cammann Fund at Harvard University.