An edited volume based on this conference is due out from MIT Press in September 2017. Check it out!

Learn more about the presentations – check out some of our speakers’ slides below!

Couldn’t attend in person? Join the conversation online: Go to @PetrieFlom on Twitter and use #specimenscience!

Description

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.

Agenda

All panels included time for audience Q & A.

8:30 – 9:00am, Breakfast and Registration

9:00 – 9:05am, Introductory Remarks

9:05 – 10:10, Panel 1: Background and Foundations

10:10 – 10:20am, Break

10:20 – 11:40am, Panel 2: Constituent Perspectives

11:40am -12:00pm, Lunch Break

12:00 – 12:40pm, Lunch Presentation: “Biospecimens and the NPRM,” Mark Barnes, Ropes and Gray LLP

12:40 – 1:00pm, Break

1:00 – 2:20pm, Panel 3: Policy and Practice

2:20 – 2:30pm, Break

2:30 – 3:50pm, Panel 4: Consent Issues

3:50 – 4:00pm, Break

4:00 – 5:20pm, Panel 5: Ethical Challenges

Please note: Susan Wolf, University of Minnesota, will not present at the conference, but will contribute a chapter to the planned edited volume on the topic (with Isaac Kohane), “Genomic Biobanks in the Era of Patient-Driven Precision Medicine: Revamping Norms, Policies & Practices.”

5:20 – 5:30pm, Closing Remarks

5:30pm, Adjourn

Learn More!

Couldn’t attend the event? Check out some of the speakers’ slide presentations!

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.