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Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons
- Source :
- AJOB Empirical Bioethics. 11:233-245
- Publication Year :
- 2020
- Publisher :
- Informa UK Limited, 2020.
-
Abstract
- Progress in precision medicine relies on the access to, use of, and exchange of genomic and associated clinical data, including from children. The ethical, legal, and social issues (ELSI) of such data access, use, and exchange may be accentuated in the pediatric context due in part to the highly sensitive nature of genomic data, children's consent-related vulnerabilities, and uncertain risks of reidentification. Systematic analyses of the ELSI and scientific reasons for why and how genomic data may be shared responsibly are, however, limited.
- Subjects :
- Genetic Research
Health (social science)
education
Genomics
Social issues
Pediatrics
Ethics, Research
03 medical and health sciences
Humans
Sociology
Precision Medicine
Child
Computer Security
030304 developmental biology
Motivation
Social Responsibility
0303 health sciences
Informed Consent
Information Dissemination
Health Policy
030305 genetics & heredity
Precision medicine
3. Good health
Data sharing
Philosophy
Policy
Systematic review
Privacy
Engineering ethics
Subjects
Details
- ISSN :
- 23294523 and 23294515
- Volume :
- 11
- Database :
- OpenAIRE
- Journal :
- AJOB Empirical Bioethics
- Accession number :
- edsair.doi.dedup.....0cfde39cde949fc9cf7f590b093bd3f8