2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies
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.
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!
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 Roberts, Professor, Alumnae College Professor in Law, 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 Mohapatra, Associate 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 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
11:40am - 12:40pm, Tinkering with Ourselves: The Law and Ethics of DIY Genomics
Barbara J. Evans, Mary 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. Mehlman, Distinguished 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. Zettler, Associate 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-Adams, Ivan 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 Kahn, James 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 Largent, Assistant 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
Natalie Ram, Assistant 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 Hazel, postdoctoral 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 Schweikart, Senior 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. Sharkey, Crystal 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 Berkman, faculty 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 Ravitsky, Associate 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
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.
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