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Personal Genetics and Law Enforcement: Improving Public Safety, Ensuring Justice, and Balancing Civil Rights

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Personal Genetics and Law Enforcement: Improving Public Safety, Ensuring Justice, and Balancing Civil Rights Personal genetics and law enforcement: Improving public safety, ensuring justice, and balancing civil rights A Congressional briefing Organized by the Personal Genetics Education Project, Harvard Medical School In cooperation with the offices of Congresswoman Louise M. Slaughter and Senator Elizabeth Warren March 19, 2015, 12:00 – 1:30 p.m. Rayburn House Office Building Washington, D.C. Personal genetics and law enforcement: Improving public safety, ensuring justice, and balancing civil rights This briefing is the third in a series about personal genetics, as the advances in technology and research that inspired President Obama’s announcement of the Precision Medicine Initiative are bringing exciting opportunities and new challenges for health, law, business, and beyond. The briefing will begin by highlighting research that illustrates how scientists are utilizing cutting-edge tools that probe the hidden world of microbes to improve health and increase public safety. Then, a panel of experts will address the uses of DNA in the criminal justice system and emerging policy questions surrounding the acquisition, interpretation, and storage of DNA samples. The panel will explore technologies that are creating new possibilities for law enforcement to protect individuals and the implications for privacy and racial justice. These issues are central to an on-going dialogue about a safe and fair integration of genetics into society. We are very pleased to welcome the Honorable Louise M. Slaughter, House of Representatives to lend her remarks to this discussion. The panelists for this briefing will be: Claire M. Fraser, PhD, Director, Institute for Genome Sciences, University of Maryland School of Medicine Duana Fullwiley, PhD, Associate Professor of Anthropology, Stanford University Henry T. Greely, JD, Director, Center for Law and the Biosciences; Professor of Law and Professor, by courtesy, of Genetics, Stanford University David Kaye, JD, Associate Dean for Research, Penn State Law, and Graduate Faculty, Forensic Science Program, College of Science, Pennsylvania State University 2 Agenda 12:00 Opening remarks and update on recent scientific breakthroughs Remarks by the Honorable Louise M. Slaughter, House of Representatives Engaging the public on personal genetics (Lauren Tomaselli, pgEd) Featured research highlight - The good, the bad, and the ugly: Genomics-enabled studies of the microbial world (Claire M. Fraser) 12:25 Personal genetics, law enforcement, and visions for the future Close Encounters of Many Kinds (The Ways Law Enforcement Collects, Uses, and Retains DNA Samples from Known Individuals): DNA Dragnets, Shed DNA, and Arrestee and Convicted Offender Sampling (David Kaye) The Creation of New Forensic Tools, Applications of DNA Ancestry Tests, and Implications for Racial Justice (Duana Fullwiley) Frontier Issues in DNA and the Criminal Law (Henry T. Greely) 1:10 Round table discussion with panelists 1:30 Conclusion Acknowledgements pgEd is supported by the Department of Genetics and Harvard Medical School, private funding from Sigma-Aldrich, Autodesk, Genentech, and IDT targeted specifically for GETed conferences and Map-Ed, and a very generous anonymous donor. pgEd thanks the offices of Congresswoman Louise Slaughter and Senator Elizabeth Warren for co-hosting this briefing. 3 pgEd Mission and Strategies The mission of the Personal Genetics Education Project (pgEd.org) is to raise awareness of personal genetics, make that awareness equally accessible across all segments of society regardless of socioeconomic, educational, ethnic, religious, or cultural background, and instill confidence in individuals to ask questions, make informed decisions, and respect the opinions of others. Our strategy is varied and includes: Educating our communities pgEd is leveraging the infrastructure of high schools and libraries as broad strategies for reaching people in communities across the nation. Its efforts include teacher trainings and conferences in order to address the challenge of scalability. pgEd develops curricular materials and other resources that are freely available online at pgEd.org. They are accessible to general audiences without a scientific background and are intended for use in biology classrooms as well as those targeting health, social studies, literature, and beyond. Engaging policymakers through Congressional briefings pgEd is organizing a series of Congressional briefings on personal genetics to engage the nation’s leaders on the importance of raising public awareness on personal genetics. Interest in the first briefing in May 2014 led to a series of four more briefings on emerging policy questions at the frontiers of genetics. Interfacing with producers and writers in the entertainment industry pgEd is working with Hollywood, Health & Society as well as The Science & Entertainment Exchange of the National Academy of Sciences to advance storylines that promote awareness of personal genetics in television and film. pgEd has advised shows, including Grey's Anatomy, which can reach millions within a single hour. ABC/Danny Feld, Boston Magazine 4 Promoting genetics awareness online through Map-Ed quizzes pgEd has developed an online tool called Map-Ed (Map- Ed.org) that has the potential to educate millions with the click of a button. Map-Ed invites players to work through short quizzes on key concepts and topics in genetics and then pin themselves on a world map. Map-Ed has spread to all 7 continents and includes pins from pioneers at all three U.S. research stations in Antarctica and from the Curiosity rover on Mars. Congresswoman Louise Slaughter entered the first pin for the latest quiz on the Genetic Information Nondiscrimination Act (GINA). Developing online videos, “Personal Conversations/Personal Genetics” pgEd has launched a video series, called “Personal Conversations/Personal Genetics,” produced by Emmy Award- winning filmmaker Marilyn Ness and Big Mouth Productions. These video vignettes relate insights, experiences, and visions for the future of personal genetics and invite viewers to “join the conversation.” Accelerating public awareness at the GETed Conference pgEd brings together experts in education, genetics research, health, entertainment, and policy at the GETed Conference to brainstorm strategies for raising awareness about personal genetics. GETed embraces a ‘let’s-get-it-done’ attitude and has proven itself to be a unique conference in terms of its content, productivity, opportunities for developing new collaborations, as well as representation of diverse communities. Expanding pgEd’s impact Other pgEd activities include serving on the education advisory board for the Genome: Unlocking Life's Code exhibit that launched at the Smithsonian and is on tour across the nation, working with the Boston Museum of Science, and advising educational efforts. 5 Briefing participants Claire M. Fraser Director, Institute for Genome Sciences University of Maryland School of Medicine [email protected] Claire M. Fraser, Ph.D. is Director of the Institute for Genome Sciences at the University of Maryland School of Medicine in Baltimore, MD. She has joint faculty appointments at the University of Maryland School of Medicine in the department of Medicine and Microbiology/Immunology. She helped launch the new field of microbial genomics and revolutionized the way microbiology has been studied. Until 2007, she was President and Director of The Institute for Genomic Research (TIGR) in Rockville, MD, and led the teams that sequenced the genomes of several microbial organisms, including important human and animal pathogens. Her current research is focused on characterization of the human gut microbiome in health and disease. Her work on the Amerithrax investigation led to the identification of four genetic mutations in the anthrax spores that allowed the FBI to trace the material back to its original source. She is one of the world’s experts in microbial forensics and the growing concern about dual uses – research that can provide knowledge and technologies that could be misapplied. Dr. Fraser has authored more than 300 publications, edited three books, and served on the editorial boards of nine scientific journals. Between 1997 and 2008, she was the most highly cited investigator in the field of microbiology. Her list of awards include: Fellow, AAAS, American Academy of Microbiology; Elected Member, Institute of Medicine (IOM); E.O. Lawrence Award, U.S. Dept. of Energy, the highest honor bestowed on research scientists by the Department of Energy; Promega Biotechnology Research Award, American Society for Microbiology; Maryland Women’s Hall of Fame; Influential Maryland Award; Drexel College of Medicine Prize in Infectious Diseases; and Thomson Reuter’s The World’s Most Influential Scientific Minds, 2014. She has served on many advisory panels for all of the major Federal funding agencies, the National Research Council, the Department of Defense, and the intelligence community. In addition, she has contributed her time as a Board member for universities, research institutes, and other non-profit groups because of her commitment to the education of our next generation of scientists. Duana Fullwiley Associate Professor of Anthropology Stanford University [email protected] 6 Duana Fullwiley is an anthropologist of science and medicine interested in how social identities, health outcomes, and molecular genetic findings increasingly intersect. Through ethnographic research, Dr. Fullwiley has worked closely
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