Health Law

Genetics, Ethics and the Law

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Join us for a conference exploring cutting-edge issues in genetics, ethics and the law May 22-23, 2013, in Charlottesville, Va. Sponsored by the University of Virginia law and medical schools, the American Society of Human Genetics, the National Society of Genetic Counselors and Athena Diagnostics, the event is targeted at medical geneticists, genetics researchers, genetics counselors, physicians, nurses, allied healthcare providers, and medico-legal counselors and regulators. The conference will explore the legal and bioethical implications of novel genetics and genomics from American and global perspectives, through a series of lectures, workshops and case discussions.

The National Society of Genetic Counselors (NSGC) has authorized up to 1.3 CEUs or 12.75 contact hours (Category 1) for the conference.  The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of certification and recertification.

Topics for the conference include:

May 23-24 Legal Workshop
Following the conference, a workshop with legal scholars will discuss in depth legal and regulatory issues, providing feedback on several invited papers.

All events take place at the University of Virginia School of Law.

Wednesday, May 22

Opening Remarks and Keynote Address
Gil Siegal, Professor of Law, University of Virginia; Director, Center for Health Law and Bioethics, Kiryat Ono College, Israel; Senior Researcher, Gertner Institute for Health Policy (on behalf of the organizing committee)
Steven  DeKosky, Dean, University of Virginia School of Medicine
Keynote: "The NHLBI Exome Sequencing Project," Steve Rich, Professor and Director, Center for Public Health Genomics, University of Virginia, NHLBI Exome Sequencing Project
"Traditional" and "Evolving" Biomedical Ethics
Jim Childress, Director, Institute for Practical Ethics and Public Life; John Allen Hollingsworth Professor of Ethics and Professor of Medical Education, University of Virginia
"Gene-ethics" – Applying Bioethical Concepts to Genetics and Genomics
Lois Shepherd, Associate Professor of Public Health Sciences, Professor of Law, University of Virginia
Discussion follows
Working Lunch with Workshops on Ethics Case Discussions
Pick up lunch in Withers-Brown Hall Student Lounge #1
Afternoon Session: Patients and Their Families

The New Challenges of Consent in Genetics and Genomics
Sonia M. Suter, Professor of Law, George Washington University

The Debate Over the Return of Research Results and Incidental Findings

Susan Wolf, McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine, University of Minnesota Law School

GINA Revisited

Jessica Roberts, Assistant Professor of Law, University of Houston Law Center


Break; refreshments in Withers-Brown Hall Student Lounge #1
Genetic Counselors: Navigating the Interface Between Molecular Diagnostics and Patient Care
Brenda Finucane, 2012 President, National Society of Genetic Counselors
Implications of Non-invasive Prenatal Genetic Testing
Jaime King, Associate Professor of Law, University of California Hastings College of the Law

Thursday, May 23

Morning Session: Next-Generation Genetics — Technology, Counseling Challenges and Ethical Dilemmas

Continental Breakfast
Withers-Brown Hall Student Lounge #1
Next Generation Genetics — Technology
Lawrence Silverman, Professor of Pathology, Scientific Director of Molecular Diagnostics Laboratory, Director of Davis Immunology Laboratory, University of Virginia
Moving Toward Next-Generation Counseling
Myra Roche, Associate Professor; Certified Genetic Counselor; Director, Genetic Counseling Services, University of North Carolina
Coverage and Reimbursement for Next-Generation Genetic Testing and Genetic Counseling
Matt Thomas, Genetic Counselor, University of Virginia
Moderators: Jim Childress, Richard Bonnie, Mark Rothstein
Ethical and Legal Issues in Whole-Genome Sequencing — Is It a Good Idea?
Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine, University of Louisville
"Why Precipitous, Population-Wide Whole-Genome Sequencing Is Probably Inevitable"
Hank Greely, Deane F. and Kate Edelman Johnson Professor of Law; 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 Interdisciplinary Group on Neuroscience and Society, Stanford University
Whole-Genome Sequencing and Privacy: Report of the Presidential Commission on Bioethical Issues
Nita Farahany, Professor of Law, Professor of Genome Sciences & Policy, Professor of Philosophy, Duke University

Working Lunch with Workshops on Ethics Case Discussions
Afternoon Session
FDA Regulation of Genetic Testing-DTC Genomics
Margaret Foster Riley, Professor of Law, University of Virginia
Cutting-Edge Issues in Forensic Bio-Banking
Erin Murphy, Professor of Law, New York University School of Law
Refreshments in Withers-Brown Hall Student Lounge #1
Evolving Legal Challenges to Gene Patents
Pilar Ossorio, Associate Professor of Law and Bioethics, University of Wisconsin
Medicine and Markets in a Just Society: The Case of Gene Patents
Arti Rai, Elvin R. Latty Professor of Law, Duke University

Course Summary
Evaluation forms, awarding certificates and adjourn

Organizing Committee: Richard Bonnie, Margaret Riley, Mark Rothstein, Gil Siegal, Lawrence Silverman

This conference was made possible through the generous sponsorship of Brad Handler (Law ’95) and the Law & Technology Initiative Fund. 

For more information, contact

The ASHG supports the educational objectives of this conference, but does not necessarily endorse the views expressed by any of the speakers.

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