2019 Petrie-Flom Center Annual Conference: Consuming Genetic

May 17, 2019, 8:30 AM - 5:15 PM

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And check out many of our speakers' slide presentations and our "Consuming Genetics" blog symposium!

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 was 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 was free and open to the public.

Agenda

8:30 - 9:00am, Registration

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 W. Clayton, and Susan M. Wolf) - Liability Implications of Direct-to-Consumer Genetic Testing
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 Genetic Conversion: An Argument for Genetic Property Rights
Moderator: I. Glenn Cohen, Faculty Director and James A. Attwood and Leslie Williams Professor of Law

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 Myth 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 Paparazzi vs. Genetic Privacy
Moderator: Nita Farahany, Professor of Law and Professor of Philosophy, Duke Law School

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 in DIY Genomics
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 Ronald A. Conlon) - Governing Non-Traditional Biology
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
Moderator: Henry T. Greely, Director, Center for Law and the Biosciences; Professor (by courtesy) of Genetics, Stanford School of Medicine; Chair, Steering Committee of the Center for Biomedical Ethics; and Director, Stanford Program in Neuroscience and Society, Stanford University

12:40 - 1:20pm, Lunch

1:20 - 2:20pm, Regulating Consumer Genetic Technologies

James W. Hazel, postdoctoral fellow, Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe), Vanderbilt University Medical Center - Privacy Best Practices for Direct-to-Consumer (DTC) Genetic Testing Services: Are Industry Efforts at Self-Regulation Sufficient?
Scott J. Schweikart, Senior Research Associate, Council on Ethical and Judicial Affairs, American Medical Association and Legal Editor, AMA Journal of Ethics - Human Genome 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
Moderator: Rina Spence, President of SpenceCare International LLC

2:20 - 2:30pm, Break

2:30 - 3:50pm, 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
Moderator: Carmel Shachar, Executive Director, the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics and Lecturer at Law, Harvard Law School

3:50 - 4:00pm, Break

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

Leila Jamal, Genetic Counselor, Division of Intramural Research and Co-Investigator, Centralized Sequencing Initiative, National Institute of Allergy and Infectious Diseases and Affiliated Scholar, Department of Bioethics, National Institutes of Health (with Benjamin Berkman and Will Schupmann) - An Ethical Framework for Genetic Counseling in the Genomic Era
Emily Qian, Genetic Counselor, Veritas Genetics (with Magalie Leduc, Rebecca Hodges, Bryan Cosca, 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 - Prenatal Genome Sequencing: Ethical and Regulatory Implications for Post-Birth Access to Information
Moderator: Melissa Uveges, Postdoctoral Fellow, Harvard Medical School Center for Bioethics

5:00 - 5:15pm, Closing Remarks

Learn More

Slide Presentations

Kif Augustine-Adams, "Generational Failures of Law and Ethics: Rape, Mormon Orthodoxy, and the Revelatory Power of Ancestry DNA"
Jorge Contreras, "Direct to Consumer Genetics and Data Ownership"
Barbara J. Evans, "Programming Our Genomes, Programming Ourselves: The Moral and Regulatory Limits of Self-Harm in DIY Genomics"
James W. Hazel, "Privacy Best Practices for Direct-to-Consumer (DTC) Genetic Testing Services: Are Industry Efforts at Self-Regulation Sufficient?"
Leila Jamal (with Benjamin Berkman and Will Schupmann), "An Ethical Framework for Genetic Counseling in the Genomic Era"
Jonathan Kahn, "Precision Medicine and the Resurgence of Race in Genomic Medicine"
Gary Marchant, "Liability Implications of Direct-to-Consumer Genetic Testing"
Maxwell J. Mehlman, "Governing Non-Traditional Biology"
Seema Mohapatra, "Abolishing the Myth of 'Anonymous' Gamete Donation in the Age of Direct-to-Consumer Genetic Testing"
Emily Qian (with Magalie Leduc, Rebecca Hodges, Bryan Cosca, Ryan Durigan, Laurie McCright, Doug Flood, and Birgit Funke), "Physician-Mediated Elective Whole Genome Sequencing Tests: Impacts on Informed Consent"
Vardit Ravitsky, "Prenatal Genome Sequencing: Ethical and Regulatory Implications for Post-Birth Access to Information"
Jessica Roberts, "In Favor of Genetic Conversion: An Argument for Genetic Property Rights"
Scott J. Schweikart, "Human Genome Editing: An Ethical Analysis and Arguments for Regulatory Guidance at Both the National and Global Levels"
Liza Vertinsky, "Genetic Paparazzi vs. Genetic Privacy"

Blog Symposium

Carmel Shachar and I. Glenn Cohen, "3 Things You Should Know About the Petrie-Flom Center’s 2019 Annual Conference"
Jorge Contreras, "Do You Own Your Genetic Test Results? What About Your Temperature?"
Clio Sophia Koller, "Getting to Know You: The Power Direct-to-Consumer Giants Have to Understanding Our Genetics"
Seema Mohapatra, "Gamete Donor Anonymity is a Myth"
Emily Qian, Magalie Leduc, and Birgit Funke, "Who are the Healthcare Providers Approving Consumer-Driven Genetic Test Orders?"
Scott J. Schweikart, "Regulation of Human Genome Editing in the Dawn of the CRISPR Era"
Erin Turbitt and Megan C. Roberts, "Ethnic Identity and Genomics Research: Toward Creating Culturally Sensitive Policies and Practices"
Alicia Yamin and Jonathan Chernoguz, "How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?"

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.