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. …
Balancing Data Privacy and Data Sharing: Normative and Technical Approaches To maximize benefits for patients, broad access to comprehensive genomic datasets is necessary. However, data sharing is in tension with privacy obligations to individuals and groups, and threatens autonomy and control over data use. Data sharing policies, governance strategies and technical solutions have been …
Autism Genomics Research: Parents’ Views on Genetic Results and Autistic Representation Decades of research into the genetics of autism suggest that genes play a significant but also complex role in autism. Studies of the experience of families participating in such studies also report variation, both in their expectations for the research and the impact its …
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 …
New ACMG Guidance on Carrier Screening: More or Less Equitable? Next-generation sequencing capabilities have enhanced general population carrier screening by expanding the number of genes and variants on carrier screening panels. Professional recommendations are shifting towards universal screening, that is: screening that is not limited to populations by race or ethnicity and more inclusive of …
Virtual Workshop January 11 – 12, 2022 This jointly supported NIEHS/NHGRI virtual workshop is meant to explore ethical, legal, and social implications (ELSI) in research endeavors related to gene-environment interaction (GxE) and genetic susceptibility to environmental exposures. As funding for more biomedical and behavioral research to explore those interactions increases, potentially novel ELSI issues are rapidly emerging. The …
Request for Abstracts The 5th ELSI Congress ELSIcon2022: Innovating for a Just and Equitable Future June 1-3, 2022 – Columbia University, New York, NY Research on the ethical, legal, and social implications (ELSI) of genetics research and its translation aims to anticipate and illuminate emerging issues relevant to policy and practice and fundamental questions of what it …