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2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies

REAL TIME Press Coverage for http://pharmaceuticalintelligence.com 

by Aviva Lev-Ari, PhD, RN

Director & Founder, Leaders in Pharmaceutical Business Intelligence (LPBI) Group, Boston

Editor-in-Chief, Open Access Online Scientific Journal, http://pharmaceuticalintelligence.com

Editor-in-Chief, BioMed e-Series, 16 Volumes in Medicine, https://pharmaceuticalintelligence.com/biomed-e-books/

  • Cardiovascular Diseases, Volume Three: Etiologies of Cardiovascular Diseases: Epigenetics, Genetics and Genomics. On Amazon.com since 11/29/2015

http://www.amazon.com/dp/B018PNHJ84

  • VOLUME 1: Genomics Orientations for Personalized Medicine. On Amazon.com since 11/23/2015

http://www.amazon.com/dp/B018DHBUO6

  • VOLUME 2: Latest in Genomics Methodologies for Therapeutics: Gene Editing, NGS & BioInformatics, Simulations and the Genome Ontology – Work-in-Progress

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2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies

AGENDA NOW AVAILABLE! 2019 Petrie-Flom Center Annual Conference image

 May 17, 2019 8:30 AM – 5:15 PM
 Conferences
 2018-2019
Harvard Law School, Wasserstein Hall, Milstein West (2019)
1585 Massachusetts Ave., Cambridge, MA

Register for this event

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2019 annual conference: “Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies.” This year’s conference is organized in collaboration with Nita A. Farahany, Duke Law School, and Henry T. Greely, Stanford Law School.

Description

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.

Already the global genetic testing and consumer/wellness genomics market was valued at $2.24 billion in 2015 and is expected to double by 2025 to nearly $5 billion. The rise of direct-to-consumer genetic testing and DIY kits raise questions about the appropriate setting for these activities, including a concern that delivering health-related results directly to consumers might cause individuals to draw the wrong medical conclusions. At the same time, advances in CRISPR and other related technologies raise anxieties about the implications of editing our own DNA, especially as access to these technologies explode in the coming years.

In an age where serial killers are caught because their relatives chose to submit DNA to a consumer genealogy database, is genetic privacy for individuals possible? Does the aggregation of data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate already significant health care disparities? How can we prepare for widespread access to genetic editing tools?

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.

This event is free and open to the public, but space is limited and registration is required. Register now!

Agenda

8:30 – 9:00am, Registration

A continental breakfast will be available.

9:00 – 9:10am, Welcome Remarks

9:10 – 10:10am, Consumer Genetic Technologies: Rights, Liabilities, and Other Obligations

  • Gary Marchant, Regent’s Professor, Sandra Day O’Connor College of Law and Director, Center for Law, Science, and Innovation, Arizona State University (with Mark Barnes, Ellen Clayton, and Susan Wolf) – Direct to Consumer Genetics and Liability
  • Anya Prince,Associate Professor of Law, University of Iowa College of Law and Member of the University of Iowa Genetics Cluster – Consuming Genetics as an Insurance Consumer
  • Jessica Robertsa George Butler Research Professor and Director of the Health Law & Policy Institute, University of Houston Law Center – In Favor of a Limited Right of Genetic Conversion: An Argument for Genetic Property Rights

10:10 – 10:20am, Break

10:20 – 11:40am, Privacy in the Age of Consumer Genetics

  • Jorge Contreras, Professor, College Of Law and Adjunct Professor, Human Genetics, University of Utah – Direct to Consumer Genetics and Data Ownership
  • Seema MohapatraAssociate Professor of Law, Indiana University Robert H. McKinney School of Law – Abolishing the Facade of “Anonymous” Gamete Donation in the Age of Direct-to-Consumer Genetic Testing
  • Kayte Spector-Bagdady, Assistant Professor, Department of Obstetrics and Gynecology and Chief, Research Ethics Service, Center for Bioethics and Social Sciences in Medicine (CBSSM), University of Michigan Medical School – Improving Commercial Health Data Sharing Policy: Transparency, Accountability, and Ethics for Academic Use of Private Health Data Resources
  • Liza VertinskyAssociate Professor of Law, Emory University School of Law and Emory Global Health Institute Faculty Fellow (with Yaniv Heled) – Genetic Privacy and Public Figures

11:40am – 12:40pm, Tinkering with Ourselves: The Law and Ethics of DIY Genomics

  • Barbara J. EvansMary Ann & Lawrence E. Faust Professor of Law and Director, Center on Biotechnology & Law, University of Houston Law Center; Professor, Electrical and Computer Engineering, Cullen College of Engineering, University of Houston – Programming Our Genomes/Programming Ourselves: The Moral and Regulatory Limits of Self-Harm When Consumers Wield Genomic Technologies
  • Maxwell J. MehlmanDistinguished University Professor, Arthur E. Petersilge Professor of Law, and Director of the Law-Medicine Center, Case Western Reserve University School of Law, and Professor of Biomedical Ethics, Case Western Reserve University School of Medicine (with Ron Conlon) – Governance of Do-It-Yourself Genomics
  • Patricia J. ZettlerAssociate Professor, Center for Law Health and Society, Georgia State University College of Law (with Christi Guerrini and Jacob S. Sherkow) – Finding a Regulatory Balance for Genetic Biohacking

12:40 – 1:20pm, Lunch

Lunch will be provided.

1:20 – 2:40pm, Consumer Genetics and Identity

  • Kif Augustine-AdamsIvan Meitus Chair and Professor of Law, BYU Law School – Generational Failures of Law and Ethics: Rape, Mormon Orthodoxy, and the Revelatory Power of Ancestry DNA
  • Jonathan KahnJames E. Kelley Chair in Tort Law and Professor of Law, Mitchell-Hamline School of Law – Precision Medicine and the Resurgence of Race in Genomic Medicine
  • Emily LargentAssistant Professor, Department of Medical Ethics and Health Policy and Senior Fellow, Leonard Davis Institute of Health Economics, University of Pennsylvania – Losing Our Minds? Direct-to-Consumer Genetic Testing and Alzheimer’s Disease: Consumer Education, Informed Consent, and Open Legal Questions
  • Natalie RamAssistant Professor of Law, University of Baltimore School of Law – Genetic Genealogy and the Problem of Familial Forensic Identification

2:40 – 2:50pm, Break

2:50 – 3:50pm, Regulating Consumer Genetic Technologies

  • James Hazelpostdoctoral fellow, Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe), Vanderbilt University Medical Center – Privacy Best Practices for Consumer Genetic Testing Services: Are Industry Efforts at Self-Regulation Sufficient?
  • Scott SchweikartSenior Research Associate, Council on Ethical and Judicial Affairs, American Medical Association and Legal Editor, AMA Journal of Ethics – Human Gene Editing: An Ethical Analysis and Arguments for Regulatory Guidance at Both the National and Global Levels
  • Catherine M. SharkeyCrystal Eastman Professor of Law, NYU School of Law (with Kenneth Offit) – Regulatory Aspects of Direct-to-Consumer Genetic Testing: The Emerging Role of the FDA

3:50 – 4:00pm, Break

4:00 – 5:00pm, The Impact of Genetic Information

  • Benjamin Berkmanfaculty member and head of section on the ethics of genetics and emerging technologies, NIH Department of Bioethics and Deputy Director of the NHGRI Bioethics Core, National Human Genome Research Institute, National Institutes of Health (with Leila Jamal and Will Schupmann) – Reexamining Non-Directiveness in Genetic Counseling
  • Emily Qian, Genetic Counselor, Veritas Genetics (with Magalie Leduc, Rebecca Hodges, Ryan Durigan, Laurie McCright, Doug Flood, and Birgit Funke) – Physician-Mediated Elective Whole Genome Sequencing Tests: Impacts on Informed Consent
  • Vardit RavitskyAssociate Professor, Bioethics Programs, Department of Social and Preventive Medicine, School of Public Health, University of Montreal; Director, Ethics and Health Branch, Center for Research on Ethics – Non-Invasive Prenatal Whole Genome Sequencing: Ethical and Regulatory Implications for Post-Birth Access to Information

5:00 – 5:15pm, Closing Remarks

Register

This event is free and open to the public, but registration is required. Register now!

Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School with support from the Center for Bioethics at Harvard Medical School and the Oswald DeN. Cammann Fund at Harvard University.

SOURCE

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

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