November 16, 2015  8:00 AM - 5:00 PM
Harvard Law School 

 

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. 

 

Please join us for a symposium to discuss the 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 will cover 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 eventually will be published as an edited volume with a major academic press. 

 

For a full agenda and to register for this event, visit our website. 

 

This event is a collaboration between Case Western Reserve University, the Petrie-Flom Center at Harvard Law School, and the Multi-Regional Clinical Trials Center at Harvard. It is supported by funding from the National Human Genome Research Institute.

This Term, in King v. Burwell, the Supreme Court considered whether the Affordable Care Act permits the government to extend tax-credit subsidies to citizens of states that have chosen not to establish their own insurance exchange. Prior to the ruling, it was clear that if the Court ruled that these subsidies were not permitted under the law, the fallout would be extensive and possibly devastating to state insurance markets, and countless local, state, and federal actors would have had to decide how to move forward. 

 

At Petrie-Flom's conference King v. Burwell and the Future of the Affordable Care Act in April 2015, scholars and practitioners in the fields of law, public health, and economics evaluated the oral argument in the case, considered how the Court was likely to rule, and explored likely impacts of a decision against the government discussed groundwork for politically-viable fixes at all levels of public and private involvement in the event of such a ruling. 

 

In response to the ruling, there is new a Blog Series at the Health Affairs Blog. Check out posts from several of our speakers responding to the Supreme Court's decision in the case!

• Gregory Curfman, Harvard Health Publications, "King v. Burwell And A Right To Health Care"
• Christie Hager, past Regional Director of HHS, currently at Beacon Health Options, "Onward And Upward For The ACA After King v. Burwell"
• David K. Jones, Boston University School of Public Health, "King v. Burwell And The Importance Of State Politics"
• Abigail R. Moncrieff, Boston University School of Law, "The Argument That Wasn't"
• Rachel E. Sachs, Academic Fellow, Petrie-Flom Center, "The ACA Survives - But With A Note Of Caution For The Future?"