PROJECT NARRATIVE The purpose of this R25 Diversity Action Plan grant proposal is to create a program that will equip students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the ELSI community of scholars.
PROJECT NARRATIVE More efficient ways for people to make decisions about having genetic testing are needed. We will compare use of a chatbot to standard genetic counseling in helping healthy adults in a primary care setting make informed choices. If similar, this intervention can expand access to genetic testing to achieve greater equity.
The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in American discourse.
This interview guide seeks to understand the experiences of those who publicly shared their direct-to-consumer genetic testing results on the online platform openSNP.
This is a printable version of the information from the Clinical Broad Data Sharing Consent Video (see this database). It describes key concepts outlined in the consent form, includes testimonials on the importance of data sharing, and contains information on the risks and benefits involved. The brochure was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.
The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form. It include testimonials on the importance of data sharing as well as information on the risks and benefits involved. The video was developed by the Clinical Genome Resource (ClinGen), a not-for-profit, National Institutes of Health (NIH)-funded resource dedicated to sharing genetic data, building knowledge, and improving patient care.