PORTAL: Program on Regulation, Therapeutics, and Law
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  • About Us
    • What is PORTAL?
    • Core Faculty
    • Research Team
    • Affiliated Faculty & Researchers
    • Expert Roundtable
  • Our Work
    • Publications
    • Policy Action
    • Literature Scan
    • In the Press
    • Media Center
    • Teaching
    • CeBIL
    • Biomarkers >
      • About The Project
      • The PBRC Team
      • Our Collaborators
      • AERO Graph
      • Workshops
      • Biomarkers2018
    • FDA REMS
  • Blog
  • Events
    • #policyethx 2020-2021
    • Events Archive >
      • #policyethx 2019-2020
      • #policyethx 2018-2019
      • #policyethx 2017-2018
      • #policyethx 2016-2017
      • Biosimilar Insulin
      • Older Events
  • Join Us
    • PORTAL Fellowships
    • Program Coordinator
  • Contact
    • Inquiries
    • E-mail List
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Building a Biomedical Information Commons:

​A Policy and Ethics Seminar


April 19, 2016  |  Harvard Medical School

Access to large public genetic databases is essential to advancing the diagnosis and management of genetic diseases. The largest databases of genetic variants are currently held by proprietary companies, such as Myriad Genetics, who control access to the data and thereby increase the cost of developing new life-saving technologies. Public databases, such as ClinGen, are racing to catch up, but have been criticized as being unreliable, expensive and vulnerable to funding cuts that compromise their upkeep. In this seminar we will explore the pros and cons of these two approaches to managing genetic information.
EXPERTS:

Robert C. Green, MD, MPH
Director, G2P Research Program in Translational Genomics and Health Outcomes
Brigham and Women's Hospital, Broad Institute, and Harvard Medical School

Heidi L. Williams, PhD
Assistant Professor in Economics
Massachusetts Institute of Technology

MODERATOR:


​Robert Cook-Deegan, MD
​
Research Professor in the Sanford School of Public Policy
Duke University

What Evidence is Essential for New Medical Products?
​
Implications for Patients and Health Policy
June 13, 2014 | AAAS Headquarters, Washington, D.C.
​
AAAS Article | Health Affairs Blog Entry
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When Less Information is Better:

​Blinding as a Solution to Institutional Corruption


​(Video available here, scroll to find lectures.)
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Edmond J. Safra Center for Ethics
Harvard University | November 1-2, 2013


Co-sponsored with the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics.

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Program On Regulation, Therapeutics And Law (PORTAL)
Division of Pharmacoepidemiology and Pharmacoeconomics
1620 Tremont Street, Suite 3030
Boston, MA 02120
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