Should research participants have a right to their own genetic data? For a second consecutive day, that question is driving a public debate between healthcare provider Kaiser Permanente and DTC genetic testing company 23andMe.
Yesterday, Kathy Schaefer, executive director of Kaiser’s Research Program on Genes, Environment, & Health (RPGEH) took the floor to explain why the RPGEH was not structured to return genetic information to its participants.
Today, 23andMe co-founder Anne Wojcicki elaborates on the criticism she first directed against the RPGEH at last week’s TEDMED 2009 conference. Wojcicki argues that research participants have a “fundamental right” to access their own genetic data and concludes:
Kaiser is breaking new ground with the RPGEH study but we believe they are missing a key component. Kaiser should afford the participants the respect they deserve by allowing them to decide for themselves whether they want to see their own genome.
Want to read more? These recent Genomics Law Report pieces address the issue of when and how individuals should have access to their genetic information:
- 11/3: Is There an Obligation to Return Genetic Data to Research Participants? Kaiser Responds to 23andMe’s TEDMED Criticism
- 11/2: Enabling Responsible Public Genomics
- 10/27: Federal Privacy Regulation and the Financially Troubled DTC Genomics Company
- 10/22: Kaiser’s Massive Genetic Database Leverages Its Patient Population (But It’s A One Way Street)
- 9/18: What Happens if a DTC Genomics Company Goes Belly Up?
- 9/1: Leveraging the Crowd to Understand Your Genome
- 8/25: Crowd-Sourcing vs. Open-Sourcing in Consumer Genomics
- 8/18: The Scientific Foundations for Personal Genomics: Recommendations from the Joint NIH-CDC Workshop
- 7/9: Genomic Research Goes DTC
In addition, these recent ELSI commentaries address the issue of when and how individuals should have access to their genetic information:
- Privacy & Ownership of an Individual’s Personal Genetic Information. Jennifer Sweeney, Knome, Inc.
- To Share or Not to Share: That is the Question. Catherine A. McCarty, Marshfield Clinic Research Foundation.
- Medical vs. “Recreational” Genomics: Drawing a Line in the Sand. Allie Janson, University Health Network/Mount Sinai Hospital’s Fred A. Litwin Family Centre in Genetic Medicine and DNA Exchange.
- It’s my genome: should researchers be obliged to return genetic data to research participants? Daniel MacArthur, Wellcome Trust Sanger Institute and Genetic Future.
- The participatory turn in medicine – Which letter in the alphabet? Barbara Prainsack, King’s College London Centre for Biomedicine & Society.