23andMe Co-Founder Anne Wojcicki Elaborates on Kaiser Criticism

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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.

Stay tuned.

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:

In addition, these recent ELSI commentaries address the issue of when and how individuals should have access to their genetic information:

Filed under: Direct-to-Consumer Services, General Interest, Genetic Testing/Screening, Genomic Policymaking, Genomics & Society, Industry News
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