Ethical considerations and strategies for launching, evaluating, and improving population genetic screening programs At the ELSI Congress in June 2022, genetic counselor Kim Foss and ELSI scholar Kate Saylor led a dynamic networking session on “Ethical Topics Associated with Population Genomic Screening”. Participants were eager to expand on some of the key issues that arose …
PLEASE NOTE NEW DATE CGS Webinar | Friday, January 20, 2023 | 11:00am CT / 12:00pm ET — In traditional predictive genetic testing, single gene variants are analyzed to determine whether individuals are at high risk of developing disease. The vast majority of diseases, however, are polygenic—caused by many different genes. Polygenic risk scores (PRS) …
Genetic Advantages in Sports: When Do They Count as “Doping”? —– What is the essence of sports, and how does that impact the way doping is defined? The sports world is already preparing for an inevitable wave of “gene-doping” as gene-transfer technologies advance and become more widely available to all ages. On the one side, …
Genetics and AI: Group Privacy and Fairness —– Big data and artificial intelligence are growing more pervasive and are creating new, complex links between individuals and the many groups to which they might belong, including groups no one might have thought of as a “group” before. How should we think about questions of group privacy, …
Advocacy and Allyship in ELSI: Opportunities and Challenges Objectivity is a weight-bearing pillar in scientific inquiry, a norm to ensure that research and its outcomes are “value free” and unaffected by subjective value judgement. Yet ELSI research, as a field, is also poised to engage, take stands, and advocate for science-based policies and courses of …
Decoloniality and Genetic Ancestry: Situating the “African Genome” The language and practice of social ancestry and genetics are steeped in history. They increasingly influence discussions about the practice of science and the role of communities, yet the meanings and concepts used in those discussions are disputed. In this ELSI Forum on decoloniality and epistemological erasures …
Legal Challenges to Newborn Screening Research The last few years have seen calls for more diverse and representative collections of biological samples for population based translational research. This need has sparked increased interest in using residual bloodspots from state newborn screening programs for research purposes, given that these collections contain DNA from all newborns born …
Addressing Algorithmic Harms: Practices and Provocations for Health AI Unique threats to patient safety and well-being from artificial intelligence (AI) in health care applications, such as bias, are now well-recognized. At the same time, policy makers and regulators are grappling with the challenges of evaluating and regulating AI-based technologies in order to minimize these threats. …
The University of North Carolina (UNC) Center for Genomics and Society (CGS) and the Center for Bioethics (C:B), together with the Program for Precision Medicine in Health Care (PPMH), announce a joint postdoctoral position in clinical ethics and the ethical, legal, and social implications (ELSI) of precision medicine. This two-year fellowship will begin in September …
Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics — New genetic technologies have incrementally but steadily altered the landscape of human reproduction. These technologies include polygenic risk scores coupled with embryo selection, fetal testing using DNA sequencing or non-invasive prenatal testing, and reproductive carrier screening. However, the broad use of and access to …