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Consuming Genomes: Constructing the Genetic Consumer in the United States
 

Consuming Genomes: Constructing the Genetic Consumer in the United States

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by Margaret Curnutte...

by Margaret Curnutte
European School of Molecular Medicine (SEMM) at the Campus IFOM-IEO (Milano), University of Milano &
Harvard Program on Science, Technology & Society

FondazioneGianninoBassetti
16 May 2011

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  • First to tell you why DTC genetic testing is particularly a matter for social investigation Projections for personalized medicine and the decreasing cost of sequencing technology. What could this mean for companies that are currently offering comprehensive SNP analysis? I refer to an article in the NYTimes:
  • Based in Silicon Valley. Founded April 2006: Linda Avey and Anne Wojcicki Interesting note: wife of Sergey Brin, co-founder of Google Not a coincidence that Google is a primary investor
  • Backed by venture capital group, Kleiner Perkins Caufield & Byers: Amazon, Sun, Genentech, Intuit Navigenics was launched: Nov. 2007 by David Agus and Dietrich Stephan Tagline: There is DNA, the raw molecular material, and there is the additional intellectual property that is part of genetic tests which is necessary to produce genetic knowledge. The you in the statement to some extent undermines the additional players involved in the development of genetic tests and subequent genetic knowledge.

Consuming Genomes: Constructing the Genetic Consumer in the United States Consuming Genomes: Constructing the Genetic Consumer in the United States Presentation Transcript

  • Consuming Genomes: Constructing the Genetic Consumer in the United States FondazioneGianninoBassetti 16 May 2011 Margaret Curnutte European School of Molecular Medicine (SEMM) at the Campus IFOM-IEO (Milano), University of Milano & Harvard Program on Science, Technology & Society
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  • How Does it Work?
  • Began offering its services 2007: < 100 Reports for $999 Currently (May 2011): 193 Reports for $99 (with annual subscription fee)
  • Health Reports:
  • Began offering services 2007: 28 Conditions for $2,499 Currently: 40 Conditions and Medications for $1,000
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  • Companies Claim to Provide Non-Medical Genetic Testing
    • 23andMe: “What we do not and will not do is provide medical advice to our customers. Though our service delivers personalized data, the information it provides is tailored to genotypes, not to individuals.”
    • Navigenics: “We do not provide medical advice, diagnosis or treatment. You should consult your doctor if you have questions regarding any medical advice, diagnosis or treatment. You should consult your doctor if you have questions regarding any medical condition, before starting any new treatment, and before stopping any treatment that has been prescribed for you.”
  • A Right to Access Personal Genetic Information
    • 23andMe: “Genetic information is a fundamental element of a person’s body, identity and individuality. As such, the rights that they enjoy with regard to financial, medical and other forms of personal information should apply to genetic information as well.”
    • Navigenics: “We believe this is a fundamental right, for people to have access to their own DNA.”
  • FDA: DTC Genetic Testing Services Are a Medical Device
  • Evaluative Criteria for Genetic Testing
    • Analytical validity: How accurately and reliably the test measures the genotype of interest.
    • Clinical validity: How consistently and accurately the test detects or predicts the intermediate or final outcomes of interest.
    • Clinical utility: How likely the test is to significantly improve patient outcomes.
    Centers for Disease Control and Prevention: Public Health Genomics Department of Health and Human Services, Secretary’s Advisory Committee on Genetic Testing. Request for public comment on a proposed classification methodology for determining level of review for genetic tests. Federal Register 2000;65(236):76643-76645 .
  • Discrepancies in Disease Risk Reporting
  • Congress: DTC Genetic Testing is a Matter of Public Health
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  • Acknowledgments
    • The Bassetti Foundation
    • - PieroBassetti& Cristina Grasseni
    • European School for Molecular Medicine
    • Giuseppe Testa
    • Program on Science, Technology & Society at the Harvard Kennedy School
    • - Sheila Jasanoff