Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons
| Autor: | Vasiliki Rahimzadeh, Gillian Bartlett, Bartha Maria Knoppers |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
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 |
| Zdroj: | AJOB Empirical Bioethics. 11:233-245 |
| ISSN: | 2329-4523 2329-4515 |
| DOI: | 10.1080/23294515.2020.1818875 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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