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 鈥淓thical Topics Associated with Population Genomic Screening鈥�. Participants were eager to expand on some of the key issues that arose …
PLEASE NOTE NEW DATE聽聽聽聽 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鈥攃aused 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 鈥済roup鈥� 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 鈥渧alue free鈥� 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 …
As an investigator in 黑料网鈥檚 Center for Genomics and Society, Dr. Cadigan studies the ethical, legal, social, and policy implications of translating genomic research into clinical care. She has designed and conducted multimethod projects involving surveys and interviews with participants and investigators of genetic research studies about issues such as return of individual research results, …
Decoloniality and Genetic Ancestry: Situating the 鈥淎frican Genome鈥� 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 …
