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Liza Vertinsky, "Genetic Paparazzi vs. Genetic Privacy"

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Liza Vertinsky, "Genetic Paparazzi vs. Genetic Privacy"

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May 17, 2019

Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.

As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.

Presentation: Liza Vertinsky, Associate Professor of Law, Emory University School of Law and Emory Global Health Institute Faculty Fellow (with Yaniv Heled) - Genetic Privacy and Public Figures

Learn more: https://petrieflom.law.harvard.edu/events/details/2019-petrie-flom-center-annual-conference

May 17, 2019

Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.

As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.

Presentation: Liza Vertinsky, Associate Professor of Law, Emory University School of Law and Emory Global Health Institute Faculty Fellow (with Yaniv Heled) - Genetic Privacy and Public Figures

Learn more: https://petrieflom.law.harvard.edu/events/details/2019-petrie-flom-center-annual-conference

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Liza Vertinsky, "Genetic Paparazzi vs. Genetic Privacy"

  1. 1. Genetic Paparazzi vs. Genetic Privacy Petrie-Flom Workshop on Consuming Genetics May 17, 2019 Yaniv Heled, Georgia State College of Law Liza Vertinsky, Emory Law School
  2. 2. Overview  Only a matter of time before we will see “genetic paparazzi” publishing genetic information on tabloid pages, lawsuits will follow.  What legal pathways will courts follow and with what consequences for how the law handles genetics?  Part of project on how legal framework(s) governing genetics are evolving and what theory or theories are/should motivate their design
  3. 3. The Context  Faster, cheaper, more accessible, more informative, more commonly used  Traditional uses include criminal law enforcement, paternity suits, medical testing  Rapid growth in DTC applications  Greater role in provision of healthcare (diagnostics, testing, precision medicine)  Breakthroughs in genetic research / new possibilities
  4. 4. Existing Legal Framework Tensions and Limits 1. Federal statutes focused largely on protecting against misuse 2. Privacy law (and limits for public figures) 3. Rights of publicity and other IP laws 4. Property (and trespass, conversion) 5. Contract laws and role of consent 6. State genetic privacy laws 7. Others
  5. 5. Pushing the boundaries  Hypotheticals of non-consensual gathering and use of genetic materials and information from public figures by the media  Public Figures as useful test case  Fewer expectations of privacy  Greater rights of publicity  Commercial potential  Paparazzi as pushing boundaries of privacy and publicity rights
  6. 6. Presidential Candidate: Genetic Privacy vs. the Press
  7. 7. Famous Celebrity: Rights of Publicity
  8. 8. Commentators suggest existing laws inadequate…  Rao (2007) examines alternative paradigms of body as property, body under contract, the private body  Rothstein (2009) examines hypothetical case of genetic stalking, suggests existing laws inadequate to prevent it  Brown (2008) discusses limited genetic privacy protection for presidential candidates  Joh (2011) argues for crime of nonconsensual genetic collection and testing
  9. 9. But what are the underlying implications?  Choice of legal pathways  Privacy  Publicity  Property  Contract  Role of consent  Genetics as speech / news  What it covers / leaves out  Why it matters
  10. 10. Fitting Multi-Dimensional DNA Into Legal Pathways (Taken from 15 for 15 (NHGRI))  DNA sequencing - Enhanced forensics  Human genomic variation - Microbes & microbiomes  Cancer genomics - DTC testing  Human origins and ancestry - The Natural World  Agriculture - Genome Editing  Genomes at work (blueprint for life) - Social Context  Rare genetic diseases - Pharmacogenomics  Noninvasive prenatal genetic testing
  11. 11. The Role (and limits) of Analogies
  12. 12. Unintended consequences
  13. 13. Example: “Junk” DNA & Law enforcement databases
  14. 14. Future example? Publicity Rights in DNA and commodification
  15. 15. Alternative legal framing  Genetics as part of one’s physical person  Genetics and dignity  Genetics as individual and collective identity  Genetics as building blocks of descendants and reproductive choices  Additional & Unknown aspects ….
  16. 16. Questions?

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