We are pleased to present Changing Life as We Know It – Exploring the Role of Genetic Modification and Our Understanding of Humanity, a FASPE Symposium featuring keynote speaker Vardit Ravitsky, President and CEO of The Hastings Center, and panel discussions with leading bioethicists and FASPE alumni.
What are the ethical issues surrounding genetic modification? How do we define – and regulate – the line between benefit and harm? In what ways do these possibilities force us to make decisions about the value of life and impose judgments about what makes a life worth living – or even what is considered “normal”? We will discuss an example in history illustrative of the ways in which assigning genetic value engendered horrific results, wherein Nazi eugenicists and government policy makers identified those considered a genetic and financial burden on the population - and aimed through sterilization and, even (euphemistically), euthanasia to eliminate “life unworthy of life”. In what ways does this history caution us? We will focus on several scenarios wherein genetic modification presents complicated questions around intended and unintended possibilities and consequences - and ultimately how we understand what it means to be human.
The program will serve to examine the ethical issues not just within medicine, but implicated within theology (and therefore the clergy), business (the ethical implications of commercialization), law (exploring the legal/regulatory roles, including recognizing the limitations imposed by the structural irrelevance of national borders), journalism (how it is described and written about will be fundamentally important in shaping understanding), and advances and uses of technology.
The Symposium will be held on Saturday, November 16, from 9 am to 5 pm at the offices of Holland & Knight in Manhattan. Registration is required to attend this event; please reserve your seat now by completing the form below if you plan to join us!
Keynote Speaker
Vardit Ravitsky is President and CEO of the Hastings Center, an independent, nonpartisan bioethics research center that is among the most influential bioethics and health policy institutes in the world. She is a Senior Lecturer on Global Health and Social Medicine at Harvard Medical School and past Full Professor at the Bioethics Program, School of Public Health, University of Montreal. She is Past President of the International Association of Bioethics and a Fellow of the Canadian Academy of Health Sciences. Ravitsky’s research focuses on the ethics of genomics and reproduction, as well as the use of AI in health. She published over 200 articles and commentaries on bioethical issues, and has given over 300 talks world-wide and over 400 media interviews.
Panelists
R. Alta Charo is the Warren P. Knowles Professor Emerita of Law and Bioethics at the University of Wisconsin at Madison. In the past, she also has served on the faculty of the UW Masters in Biotechnology Studies program and the Dept. of Medical History and Bioethics at the School of Medicine & Public Health. For the 2019-2020 academic year, she was on leave while a Berggruen fellow at the Center for Advanced Study in Behavioral Sciences at Stanford University. She later completed service as the inaugural David A. Hamburg Fellow at the Nuclear Threat Initiative in Washington DC, where she joined the biosecurity team.
From 2021-2023, Charo was the lead co-chair of the 4S (safety, security, sustainability and social responsibility) unit of the new Dept of Defense biotechnology manufacturing innovation institute, "BioMADE" and now consults on gene therapy and genome editing in medical and enviromental applications for various pharmaceutical, gene therapy, xenotransplant, infertility therapy, and conservation genetics companies, and for the Dept of Defense Advanced Research Projects Agency (DARPA).
Teresa Blankmeyer Burke is Professor of Philosophy and Director of the School of Arts and Humanities at Gallaudet University. Gallaudet University is the world's only bimodal bilingual university for deaf, hard of hearing and hearing students, with courses delivered in American Sign Language and written English. Dr. Burke's research includes publications in bioethics, ethical theory, applied ethics, ethics of emerging technology, ethics of sign language interpreting, philosophy of disability, philosophy and public policy, and moral psychology. She has provided her expertise in bioethics and disability to numerous international, national and state entities, including the United Nations, the National Council on Disability (USA), the World Federation of the Deaf, the Registry of Interpreters for the Deaf (USA). Dr. Burke also participates in public philosophy, including working with spoken, written, and signed language media outlets, including NPR, PBS, Al Jazeera, The Daily Moth (ASL news), the New York Times, and The Economist, among others. She is also a published poet and creative nonfiction author in written English and American Sign Language. Dr. Burke is the first signing Deaf woman to achieve a PhD in Philosophy in the world.
Dr. James Huang is the Director of Student Health Service at Gallaudet University. Dr. Huang's experiences as a child of deaf adults (CODA) and having moderate-severe hearing loss have motivated him to focus on improving healthcare delivery to deaf and hard-of-hearing populations. He completed the Social and Family Medicine Residency Program at Montefiore Medical Center, where he served as chief resident. After completing the Atlantic Fellows for Health Equity year-long fellowship at George Washington University in 2018, he is a Senior Atlantic Fellow. In addition to his clinical work, Dr. Huang is Vice President of the board of the Association of Medical Professionals with Hearing Loss (AMPHL) and a Commission on Diversity, Equity, and Inclusion member at the American Academy of Family Physicians (AAFP). He is also a DC Food Policy Council member and co-chair of the Health and Nutrition working group. He recently received the Early Achievement Award from the Alumni Association of the University of Vermont Larner College of Medicine and was a 2020 recipient of the 40 under 40 Leader in Health award from the National Quality Minority Forum.
Devan Stahl is an Associate Professor of Bioethics and Religion at Baylor University and Adjunct Associate Professor in the Department of Education, Innovation, and Technology at the Baylor College of Medicine. She received her Ph.D. in Health Care Ethics from St. Louis University and her M.Div. from Vanderbilt University. She specializes in theological bioethics, disability ethics, and the visual arts within medicine. Dr. Stahl also volunteers as a clinical ethicist consultant for the Supportive and Palliative Care Team at Baylor, Scott, and White Hillcrest and has trained as a hospital chaplain. Dr. Stahl is the cohost of the popular podcast Bioethics for the People, now in its sixth season. She is the author and editor of several book including, Imaging and Imagining Illness: Becoming Whole in a Broken Body (Cascade Books) Disability’s Challenge to Theology: Genes, Eugenics, and the Metaphysics of Modern Medicine (Notre Dame Press), and Bioenhancement Technology and the Vulnerable Body: A Theological Engagement.
Anna Louie Sussman is a freelance journalist covering gender, economics, and reproduction. She has written for The New York Times, The New Yorker, The Atlantic, The New York Review of Books, and other publications. She has reported from nearly two dozen countries, and is currently working on her first book, Inconceivable: Reproduction in an Age of Uncertainty. She has been the recipient of numerous grants, fellowships, residencies, and awards, including from the Logan Nonfiction Program, MacDowell, the Fetisov Journalism Awards, the Hambidge Center, Pulitzer Center on Crisis Reporting, the McGraw Fellowship for Business Journalism, the Economic Hardship Reporting Project, the DeGroot Foundation, and others. She was a member of the 2022 Class of New America Fellows and the 2024 cohort of Alicia Patterson Foundation Fellows. She is currently an Omidyar Network Reporter in Residence.
Moderators
Michaela Reinhart, MD (FASPE Medical 2023), is a Clinical Assistant Professor within the Division of Pediatric Genetics and Metabolism at the University of North Carolina at Chapel Hill and FASPE Medical Alum (’23). She completed her medical degree at UNC Chapel Hill and her Pediatrics-Medical Genetics residency and Medical Biochemical Genetics and Mitochondrial Medicine fellowship at the Children’s Hospital of Philadelphia. She specializes in treating inborn errors of metabolism and mitochondrial disorders. Dr. Reinhart’s interests include examining the ethical application of biochemical, genetic, and genomic technologies to pediatric populations and providing medical education for both clinical trainees and for laypeople
Samantha Smith, Lawyer, Washington DC (FASPE Law 2022)
Program Schedule
9:00am – Breakfast
9:30am – Welcome
9:45 – 10:45am – Understanding the Past: Nazi Eugenics, Thorsten Wagner, Executive Director for Strategy and Academics, FASPE
10:45-11:00am – coffee break
11:00 -12:15pm – Bioethical implications of genetic modification, Keynote speaker, Vardit Ravitsky, CEO and President, The Hastings Center
12:15 - 1:15pm – Lunch
1:15 - 2:30pm – Panel Discussion – Disability – This session will explore a series of scenarios surrounding parental choice about avoiding or inviting the conception of a genetically-deaf child.
Moderator: Michaela Reinhart, MD, Assistant Professor of Pediatrics, Division of Genetics and Metabolism, UNC Children's Hospital (FASPE Medical 2023)
Panelists: Alta Charo, Warren P. Knowles Professor of Law and Bioethics emeritus, University of Wisconsin–Madison, Teresa Blankmeyer Burke, Professor of Philosophy, Director of the School of Arts and Humanities, Gallaudet University, Dr. James Huang, Director of Student Health Service, Gallaudet University, Devan Stahl, Associate Professor of Bioethics and Religion, Baylor University, Anna Louie Sussman, freelance journalist covering gender, economics, and reproduction.
2:30-2:25pm – coffee break
2:45 - 4:00pm – Panel Discussion – Enhancement – This session will explore a series of scenarios exploring different forms and contexts of hearing enhancement, allowing for panelists and audience members to think through the significance (if any) of enhancements achieved through mechanical assistance vs drugs vs epigenetic editing, as well as the significance of social context.
Moderator: Samantha Smith, Lawyer, Washington DC (FASPE Law 2022)
Panelists: Alta Charo, Warren P. Knowles Professor of Law and Bioethics emeritus, University of Wisconsin–Madison, Teresa Blankmeyer Burke, Professor of Philosophy, Director of the School of Arts and Humanities, Gallaudet University, Dr. James Huang, Director of Student Health Service, Gallaudet University, Devan Stahl, Associate Professor of Bioethics and Religion, Baylor University, Anna Louie Sussman, freelance journalist covering gender, economics, and reproduction.
4:00-5:00pm - Closing reception