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Consensus Study Report, Proposed Revisions to the Common Rule for the Protection of Human Subjects in the Behavioral and Social Sciences, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2014)
This National Academies Press publication documents the evidence-based findings, conclusions, and recommendations of a committee of experts on human subjects protections in social and behavioral…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Video
ELSIcon2024: Behind the screens: A case study of misconceptions reflected in social media on the role of health-related consumer genomics services in IGG
ELSIcon2024 • Paper • June 10, 2024 Authors: Speaker: Nathan Reed – Northwestern University When novel applications of science emerge, social media is one of the first places…- ELSIcon2024
- 6th ELSI Congress
- Biobanking and genomic databases
- Genetic testing for non-medical purposes
- Law, regulation, and governance
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Publication
Review of Belief in God in an age of science, by John Polkinghorne; Genes, genesis and God: Values and their origins in natural and human history, by Holmes Rolston, III; The genetic Gods: Evolution and belief in human affairs, by John C. Avise
Journal for the Scientific Study of ReligionDigital 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… -
Additional Resource
Arkansas State Statute (Arkansas: Ark. Code §20-35-101 et seq.)
No individual records of subjects in genetic research studies approved by an institutional review board or conducted subject to the requirements of the federal common rule may be subpoenaed or…- statute
- Privacy
- Informed Consent
- written consent
- insurer disclosure
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Video
ELSIcon2024 Plenary: Scientific, Regulatory, and Ethical Implications of Interventional Genetics and Individualized Medicines
ELSIcon2024 • Plenary • June 12, 2024 Authors: Timothy Yu, MD, PhD - Harvard University Advances in neurogenetics reveal an increasingly visible category of unmet need: precisely…- ELSIcon2024
- 6th ELSI Congress
- precision medicine
- Clinical genetic testing
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Publication
How people undergoing genomic sequencing interpret and react to varied secondary findings with limited actionability
Personalized Medicine -
Publication
Supporting stewardship: Funding, utilization, and sustainability as ethical concerns in networked biobanking
AJOB Empirical Bioethics -
Video
Value and Values in Payment for Gene Therapies
The ELSI Friday Forum was held on May 12, 2023. Advances in gene therapies for monogenic disorders have brought hope of curative treatment. Since the Food and Drug Administration first approved a…- gene therapies
- cost of gene therapies
- payment
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Grant Abstract
Increasing confidence and changing behaviors in primary care providers
Primary care physicians have almost no training in genetics, nor in the ethical, legal and social implications (ELSI) of genetic testing, diagnosis and therapy. Further, mere provision of curricular…- Advertisements
- Affect
- arm
- Attitude
- base