Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions —– Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized therapies—including directly administered vectored gene therapy, genetically modified cellular therapies, and antisense oligonucleotides, among others—refer to products designed to treat one to a few individuals …
Population Descriptors in Genomic Research: Applying the NASEM Recommendations —– History demonstrates that the potential for typological thinking continues to be a hazard of genetic research involving human groups. In 2022 the NIH commissioned a NASEM study on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research to determine if and …
Legal and Policy Challenges to Privacy in the Post-Genomic and Post-Dobbs Era —– Rapid growth in genetic understanding presents challenges for expectant parents, now complicated by the Dobbs decision’s removal of federal constitutional protection for private reproductive decision-making. This panel will discuss two emerging issues for genetic information after Dobbs: prenatal gene therapy and law …
The Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research Thursday, April 20, 1:00pm – 2:30pm Bondurant G100 Please click here for more information.
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 …
As an investigator in UNC’s 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, …