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Publication
Values in translation: How asking the right questions can move translational science toward greater health impact
Clinical and Translational Science -
Grant Abstract
Genetics and genomic research in Uganda: Towards context specific ethics guidelines
The overall goal of this proposed project is to systematically develop culturally appropriate model ethics guidelines for conducting genetics and genomics research (GGR) in Uganda. This goal will be…- Africa
- Africa South of the Sahara
- authority
- Awareness
- Bioethics
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Video
ELSIcon2022 Late-Breaking: Is a gene running in your family? Perceptions of responsibility to inform relatives about genetic cancer predisposition and risk management: an in-depth qualitative Swiss-Korean comparative analysis
ELSIcon2022 • Networking Session • Late-breaking Abstracts • May 31, 2022 Monica Aceti This study examines the different meanings of responsibility to disclose to family about genetic…- Live
- Networking Session
- Late-breaking Abstracts
- Disclosure of genetic risk information to relatives
- Genetic Counseling
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Publication
It's all in the timing: Calibrating temporal penalties for biomedical data sharing
Journal of the American Medical Informatics AssociationThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG009028 -
Publication
Pathways across the valley of death: Novel intellectual property strategies for accelerated drug discovery
Cambridge University PressDuke University Center for Public Genomics. Grant number(s): P50HG003391 -
Publication
A game theoretic approach to balance privacy risks and familial benefits
Scientific ReportsGuo and colleagues use a game theoretic approach to model how consumers of third-party interpretation (TPI) services may act as they weigh the benefits of sharing their genetic data against the… -
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Grant Abstract
Outcomes of Cx26 Testing in Deaf/Hard of Hearing Adults
Genetic testing for deafness is now a reality with the identification of Connexin 26 (Cx26, GJB2) as a cause of up to 50% of nonsyndromic sensorineural deafness. Because deafness is viewed as a…- 18 year old
- Address
- Adult
- Affect
- Anxiety
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Publication
Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services
American Journal of Human GeneticsGuerrini and colleagues surveyed 23,196 genetic relative-finder (GRF) service participants and found that discoveries of genetic relatives are common. Most respondents reported that the discoveries…