This decade has seen a dramatic expansion and acceleration of genetics and genomics research, with notable ethical, legal, and social implications (ELSI).
- Researchers have identified numerous genes associated with human behavior and risk of common diseases, including diabetes, heart disease, and cancer.
- Commercialization of services based on these new findings has launched several biotechnology companies and spawned the controversial development of direct-to-consumer (DTC) whole-genome testing.
- Congress passed the Genetic Information Nondiscrimination Act (GINA) last year to protect against misuse of genetic information by third parties, and President Obama touted his sponsorship of a Genomics and Personalized Medicine Act during the recent presidential campaign.
These events reflect the emergence of “personal genomics:” a field that some suggest will transform medical care and our understanding of human behavior. Others, however, worry that these advancements will lead to an unwarranted “geneticization” of illness and behavior and reawaken troublesome past views of race as biologically determined. If the positive promises of this field are to be realized (and its unintended harms minimized), ongoing and constructive interdisciplinary engagement is required.
The seminar series is designed to engage U-M faculty and students alike in business, law, public policy, medicine, public health, and genetics regarding ELSI issues posed by the following three cutting-edge topics in personal genomics at the intersection of health, policy and industry:
- What policymaking challenges are involved in the commercialization of genomic discoveries? How do we simultaneously promote innovation and social justice?
- What ethical dilemmas are posed by the move toward large-scale genomic research (e.g, biobanks)? What responsibilities do researchers have regarding use and management of genetic information?
- How can we achieve meaningful public and community engagement on appropriate practices and governance of personal genomics?
- What are the implications of emerging genomic research for racial and social identity? For how we view and treat complex diseases?
- How can we provide effective public and professional education about the benefits, risks, and limitations of emerging personal genomics services?
The emergence of “personal genomics,” the corresponding commercialization of services informed by genomics research, and the broader implications for individuals and society merit ongoing and constructive interdisciplinary dialogue if policies are to be developed that maximize the positive promises of genomics research and minimize its unintended harms. This seminar series provides a setting to bring together nationally recognized experts in the field to engage faculty and students alike in business, law, public policy, medicine, public health, and genetics to explore the ethical, legal, and social implications posed by the rapid expansion of genomics services and research.
- Engage students and faculty members to think more broadly about the ethical, legal and social implications of personal genomics services and understand how stakeholder perspectives overlap and conflict;
- Create an environment where students and faculty can interact and foster collaborative relationships while learning about emerging applications of personal genomics; and
- Develop infrastructure for a University-wide network in the area of genomics, health, and society that would support future interdisciplinary efforts, including research and training programs
|| Scott Roberts, PhD
Assistant Professor of Health Behavior & Health Education (HBHE); Committee Chair, ELSI Personal Genomics Seminar Series; U-M School of Public Health
Dr. Roberts conducts research on the development and evaluation of genetic risk assessment programs for adult-onset diseases, including a NIH-funded series of randomized clinical trials of genetic testing for Alzheimer’s disease.
||Toby Citrin, JD
Adjunct Professor, Department of Health Management and Policy; Director, Center for Public Health & Community Genomics; U-M School of Public Health
Professor Citrin is a highly recognized leader in public health genomics, where he specializes in academic-community partnerships to engage and educate diverse communities about ELSI issues, genomics and policy development.
||William Hall, PhD, MBA
Adjunct Professor of Strategy; Member, U-M Life Sciences Institute Leadership Council; U-M Ross School of Business
Dr. William (Bill) Hall is a Chicago-based private equity investor specializing in healthcare and industrial companies. He is also an Adjunct Professor at the Ross School of Business at the University of Michigan where he teaches MBA electives on leadership and strategy.
||Sharon Kardia, PhD
Professor and Chair, Department of Epidemiology; Director, Life Sciences and Society Program and Public Health Genetics Interdepartmental Concentration (IC); U-M School of Public Health
Dr. Kardia is an internationally recognized leader in research on cardiovascular disease genomics and has developed novel strategies to understand gene-environment interactions and risk of common diseases.
||Shobita Parthasarathy, PhD
Assistant Professor of Public Policy; Co-Director, Science, Technology, and Public Policy Program; U-M Ford School of Public Policy
Dr. Parthasarathy's research is on the politics of genetics and biotechnology, both in the U.S. and abroad. Her book Building Genetic Medicine: Breast Cancer, Technology, and the Comparative Politics of Health Care (MIT, 2007) compares the development of genetic testing for breast cancer in the U.S. and Britain.
||Elizabeth Petty, MD
Associate Dean of Student Programs; Medical Director, Genetic Counseling Training Program; Professor, Internal Medicine and Human Genetics; U-M Medical School
Dr. Petty is the past Adult Medical Genetics Clinic Director and Service Chief, Molecular Medicine and Genetics. Her interests include cancer genetics research, genetics education, and social science research on genetic understanding.
||Beth Tarini, MD, MS
Assistant Professor, Child Health Evaluation and Research (CHEAR) Unit, Division of General Pediatrics; U-M Medical School
Dr. Tarini's research focuses on organization, communication and delivery of services for newborn screening and pediatric genetic testing.
||Wendy Uhlmann, MS, CGC
Clinical Assistant Professor, Internal Medicine and Human Genetics; Genetic Counselor, Adult Medical Genetics Clinic; U-M Medical School
Ms. Uhlmann is a nationally recognized leader in the field of genetic counseling, having served as past president of the National Society of Genetic Counselors and is the co-editor of "A Guide to Genetic Counseling", a leading textbook in the field.
||Beverly Yashar, MS, PhD
Clinical Associate Professor, Departments of Human Genetics and Ophthalmology/Visual Sciences; Director, Genetic Counseling Program;
U-M Medical School
Dr. Yashar's research is focused on understanding the implications and applications of gene discovery to the practice of clinical genetics and genomic medicine. She is the co-editor of "A Guide to Genetic Counseling" and is on the Board of Directors for the American Board of Genetic Counseling.
||Kurt Christensen, MPH, Doctoral candidate
Doctoral Candidate in the Department of Health Behavior and Health Education; Alumnus, Public Health Genetics IC; U-M School of Public Health
Mr. Christensen is engaged in several ELSI-related projects and will serve as the committee’s student representative.
We invite those who are interested in our work to contact us at:
ELSI Personal Genomics Seminar Series
University of Michigan School of Public Health
Department of Health Behavior and Health Education
1415 Washington Heights
Ann Arbor, MI 48109-2029
Phone: (734) 615-2422