Past Event

Mahsa Shabani – Improving the Governance of Genomic Data Access for Research Purposes: The Case of Data Access Committees

March 20, 2017
12:00 PM - 1:00 PM
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Rm. 6205, New York State Psychiatric Institute 1051 Riverside Drive, New York

Speaker: Mahsa Shabani, MA, LLM, Doctoral Student, University of Leuven, Belgium

To ensure authorized access to genomic data, access review by data access committees (DACs) has been utilized as one potential solution. Based on the findings of interview studies with members of DACs based in North America, Europe and Australia, I discuss the core elements to be integrated into the fabric of access review by both established and emerging DACs, in order to foster fair, efficient, and responsible access to genomic datasets.

Mahsa Shabani holds a Bachelor degree in Law (2006) and LL.M in Public Law (2008) (Shahid Beheshti University Tehran) and a Postgraduate Master in Bioethics (2012) (KU Leuven, University of Nijmegen and University of Padova). Since September 2012 she has been collaborating with Prof. Pascal Borry at the Center for Biomedical Ethics and Law at the University of Leuven. Before she joined the Center for Biomedical Ethics and Law, she served as a research assistant at the Avicenna Research Institute, a research associate at the Iranian Parliament Research Center, and a legal advisor at LUH Law Firm in Tehran. In October 2013 she was awarded University of Leuven’s IRO doctoral scholarship in order to conduct a PhD project on the ethical and legal challenges of data sharing in genomics. In 2015, she was a visiting scholar at the Center of Genomics and Policy at McGill University, and the Center for Health, Law and Emerging Technologies (HeLEX) at University of Oxford. She has been also collaborating with the Regulatory and Ethics Working Group of Global Alliance for Genomics and Health initiative, the EUCelLEX project, CHIP ME (COST Action IS1303) and ELIXIR.

This seminar is part of the Seminar on Ethical, Legal and Social Implications of Genetics series. Sponsors include the Center for Research on Ethical/Legal/Social Implications of Psychiatric, Neurologic & Behavioral Genetics, the Department of Psychiatry at Columbia University Medical Center.