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Data Dictionary: Willingness to Pay (WTP)
Rothwell and colleagues used a willingness to pay (WTP) survey to evaluate the values individuals place on the information provided by a genetic counseling consultation providing incidental findings… -
Publication
Genetic data protection as an indispensable element of genomic medicine development
Polish Archives of Internal Medicine -
Additional Resource
Workshop Proceedings, Making the Living World Engineerable: Science, Practice, and Policy, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2016)
This National Academies Press report summarizes the proceedings of a workshop that explored developments in synthetic biology; possible risks and benefits; and associated legal, regulatory, and…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Grant Abstract
A Policy-Oriented History of Newborn Screening for PKU
Phenylketonuria (PKU) has played a prominent role in the development of modern genetic medicine. Individuals with this rare inherited disease are unable to metabolize phenylalanine, an essential…- adolescence (12-20)
- adult human (21+)
- behavioral /social science research tag
- Behavioral Genetics
- Clinical Research
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Publication
Benefit-sharing by design: A call to action for human genomics research
Annual Review of Genomics and Human Genetics -
Video
ELSIcon2022 Paper: Neglected ELSI in Biobanking: Addressing Issues of Governance, Stewardship, and Equity
ELSIcon2022 • Paper • June 3, 2022 Roselle Ponsaran, Kyle B. Brothers, Aaron Goldenberg, Jean Cadigan The promotion of precision medicine has led to increased interest in larger collections…- Live
- Paper
- equity and justice in genetics
- Data and data stewardship
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Publication
A right to reasonable inferences: Re-thinking data protection law in the age of big data and AI
Columbia Business Law Review -
Publication
Patient-generated health data (PGHD): Understanding, requirements, challenges, and existing techniques for data security and privacy
Journal of Personalized Medicine -
Publication
NIH recombinant DNA talks
LancetDigital 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…