Rapid advances in genomic technologies such as next-generation sequencing are transforming our understandings of both human health and human history. These technologies also promise unprecedented power to intervene on the bodies of individuals with or at risk of disease, and even to alter the identities or futures of individuals not yet born. Such knowledge and power imply immense responsibility to use them in ways that promote core ethical values, including individual and collective welfare, social justice, protection of the vulnerable, and respect for both the autonomy of persons and the interests of communities. Fulfilling these responsibilities requires a cadre of diverse, highly trained, interdisciplinary scholars prepared to engage critically and respectfully with the profound ethical, legal and social challenges raised by genetic and genomic technologies. Responding to this need, the fundamental goal of the Penn Postdoctoral Training Program in the Ethical, Legal and Social Implications (ELSI) of Genetics and Genomics is to prepare trainees for success as creative, independent investigators in the field of ELSI research. The program, housed within the Department of Medical Ethics and Health Policy at the Perelman School of Medicine, will achieve this goal through two core components: 1) completion of a Master of Science in Medical Ethics (MSME) degree that blends training in conceptual bioethics, empirical methods and genetic science, and 2) mentored original research leading to high-impact empirical and conceptual scholarly publications. An outstanding program faculty, consisting of 12 experienced ELSI scholars and mentors from departments at the Perelman School of Medicine, the School of Arts and Sciences and the Penn Law School, will serve as preceptors to program trainees. Trainees will present at and participate in the Department of Medical Ethics and Health Policy's monthly works-in-progress and seminar series, attend a wide range of seminars and conferences across the University focused on genetic medicine and science as well as on ethics, law, economics and health policy, and present at national meetings. Trainees will also gain exposure to genetic medicine through shadowing expert geneticists and counselors drawn from the full spectrum of adult, pediatric and reproductive genetics practice. Finally, trainees will serve as members of one of the UPenn institutional review boards (IRBs) that review ELSI-related research. The program will train seven postdoctoral scholars, each of whom will participate for three years, and will ensure diversity of discipline and background among enrolled trainees by extensive targeted outreach to diverse academic communities.
Genomic technologies promise to transform our understandings of human biology and history, and offer unprecedented power to influence the health of individuals and generations. Such knowledge and power imply immense responsibility to use them in ways that promote social and ethical values. The proposed training program will nurture a diverse cadre of diverse interdisciplinary scholars prepared to critically and respectfully engage with the profound ethical, legal and social (ELSI) challenges raised by genomic technologies.
| Kilbride, Madison K; Joffe, Steven (2018) The New Age of Patient Autonomy: Implications for the Patient-Physician Relationship. JAMA 320:1973-1974 |
