Similar to the second webinar, the penultimate session of the series discusses who owns, controls, and benefits from the results of research done with residual DBS. Three models for the ownership of this research are presented: Charitable Trust, Open Results, and Shared Ownership. The vice president of Genetic Alliance spoke about the biobank run by their advocacy group, and the importance of the sharing this information. The session concludes with another example, sharing the successful system for newborn screening in the state of Massachusetts, and the importance of maintaining privacy and confidentiality in the distribution of research results.
Session 5: Ownership and Control of Research Results
Thursday, August 30, 2012
Denise Chrysler, JD; Natasha Bonhomme; Anne Marie Comeau, PhD
Webinar slides (PDF):