March 3, 2015 -- University of Houston Law Center Professors Barbara Evans and Jessica Roberts took their expertise in the fields of genetics and genomic medicine to NASA’s Johnson Space Center recently to explore the role of genetic testing in personalized medicine and in mitigating risks related to space flight.
The workshop Feb. 24–25 brought together a small group of experts in clinical genetics, genomic research, bioethics, and law, including senior federal regulators and NIH personnel as well as geneticists and bioethicists from several top medical schools.
Evans, George Butler Research Professor and director of the Center for Biotechnology & Law at the Law Center, discussed FDA’s recent moves to regulate genomic testing and the permissible collection of genetic data for use in health and wellness programs under the Genetic Information Nondiscrimination Act of 2008 (GINA). She also outlined the interplay of the National Aeronautics and Space Act with other federal laws like GINA and the Occupational Safety and Health Act in non-terrestrial work environments.
Roberts, a nationally recognized authority on genetic-information discrimination and the bioethics of using genetic information, spoke about restrictions on collection and use of genetic information under GINA.
After the workshop, participants were taken on a VIP tour of the historic control room from the Apollo 11 moon-shot and visited several of NASA’s flight simulation and training facilities.
Last year Evans served on the Institute of Medicine’s Committee on Ethics Principles and Guidelines for Health Standards for Long Duration and Exploration Spaceflights. The committee recently published ethics principles and a decision framework for setting crew health and safety standards. She also was chosen as a Greenwall Faculty Scholar in Bioethics for 2010-2013 and presently conducts a portfolio of sponsored research projects exploring legal issues in genomic research, genomic medicine, and privacy and data access issues in modern biomedical research.
Roberts is a sought-after speaker and advisor on legal and ethical uses of genetic information by employers. In October 2014, she participated in a congressional briefing on genetic testing organized by the Harvard Medical School’s Personal Genetics Education Project and sponsored by the offices of U.S. Rep. Louise Slaughter, D-N.Y., and U.S. Sen. Elizabeth Warren, D-Mass.