Workshops: Session II
Saturday, June 25 2011
11:00 a.m. – 12:30 p.m.

The research value of biobanks grows exponentially when participants’ involvement is deep and ongoing – for example, when they are willing to contribute multiple biospecimens, fill out surveys, and allow researchers to contact their physicians over time. De-identification of participants’ contributions has been used protect their privacy, but it isn’t a guarantee. More importantly, de-identification means that some things that are important to participants – like getting individual research results, or receiving information about the studies they’ve contributed to – can’t be carried out. Science suffers too, as researchers can’t gather additional data. As we move beyond de-identification, what should be the relationship between biobank managers and those who contribute?

Presenters:
Joann Boughman – Executive Vice President, American Society of Human Genetics (moderator)
Liz Horn – Director, Genetic Alliance BioBank
Barbara Koenig – Professor of Biomedical Ethics & Medicine, Mayo Clinic College of Medicine
P. Pearl O’Rourke – Director of Human Research Affairs, Partners HealthCare Systems