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 …
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 …
Tuesday, Oct. 26, 4:00p – 5:00p Nobel Laureate Jennifer Doudna, PhD CRISPR: Rewriting DNA and the Future of Humanity. Click here to register – https://duke.qualtrics.com/jfe/form/SV_bEKXMF9CZMokVcq
Following a break in August 2021, the 2nd ELSI Friday Forum series will begin in September. September 10, 2021 – Remembering 9/11: Ethical, Legal and Social Issues with Using DNA for Disaster Victim Identification – details coming soon Amy Mundorff, PhD Jay Aronson, PhD Moderated by Jennifer Wagner, JD, PhD.
Multiple US states have passed laws limiting the ability to terminate a pregnancy affected by Down syndrome or other genetic conditions, with the Ohio version of this law recently upheld by the US Sixth Circuit Court of Appeals (Preterm Cleveland v. McCloud). Yet historically, the relationship between prenatal genetics and abortion has always been complex. …
Join the UNC Program for Precision Medicine in Health Care (PPMH) for Precision Medicine Approaches to Addressing Social Determinants of Health, a free virtual mini-symposium from 1:00-2:45pm on Wednesday June 30. Presenters will explore the complex relationships between where people live and work and their health. It shouldn’t take a pandemic: Social determinants of …
The Precision Analytics group of the Program for Precision Medicine in Health Care is collaborating with the NC Translational and Clinical Sciences Institute (NC TraCS) to offer a virtual workshop that will provide an introduction to working with patient or clinical data. During the workshop, participants will work with a deidentified Electronic Health Record (EHR) …
Friday, June 11, 12:00p EDT Panelists Melissa Creary and Liza Johnson will describe the current state of therapy for sickle cell disease, and some ethical issues that arise in the emerging use of gene transfer or gene editing for treating the disease. Dr. Johnson will focus on ethical issues identified by patients, and Dr. Creary …
Mar 12, 2021 | 12:00 PM EST Click here to register. This Friday Forum will consider the ethical, social, and legal implications of the diverse applications of DNA technologies that impact migrants entering or resident in the United States. When migrating family members go missing or a body is found along a migration route, familial …