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Publication
Immortal data: A qualitative exploration of patients’ understandings of genomic data
European Journal of Human GeneticsLyle and colleagues analyze how patients and their relatives conceptualize the “immortality” of genomic data. They find that participants focus on the simplicity of providing a sample instead of the… -
Publication
Data sharing in genomics--re-shaping scientific practice
Nature ReviewsDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Managing incidental findings in human subjects research: Analysis and recommendations
J Law Med Ethics -
Publication
New NIH rules promote greater sharing of tools and materials
ScienceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Biobanking and data sharing: A plurality of exchange regimes
Genomics, Society and PolicyDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Video
Reporting practices for sexual and gender minority demographic information in NIH-supported genomic studies
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Zo Bly, BA (they/them/theirs) - National Human Genome Research Institute, National Institutes of Health Clearly defined and…- ELSIcon2024
- 6th ELSI Congress
- Gender studies
- Methodology and study design
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Publication
Data ownership in genomic research consortia
Journal of Law and the Biosciencesby Jane Nielsen & Dianne Nicol -
Publication
Assessing the privacy risks of data sharing in genomics
Public Health GenomicsDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Grant Abstract
Impact of Privacy Environments for Personal Health Data on Patients
A big data ecosystem is evolving in our society in which people may have, or feel they have, little control over the flow of their personal health information, and thus their privacy. Further,…- Adult
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- Behavioral