Returning Results to Family Members: Professional Duties in Genomics Research in the United States.
This article critically appraises the ethical and legal duties to disclose findings to the family members of research participants. These family members stand to benefit in important ways from discoveries that can inform their own health and reproductive risks. However, careful appreciation of how...
| Publicado en: | Journal of Legal Medicine Vol. 38; no. 2; pp. 201 - 220 |
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| Autores principales: | , , |
| Formato: | case study Journal Article |
| Publicado: |
Taylor & Francis Ltd
Apr-Jun2018
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=132202813&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 132202813 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 01947648 B9P jtl: Journal of Legal Medicine issn: 01947648 maglogo: N pubinfo: dt: Apr-Jun2018 vid: 38 iid: 2 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 132202813 132202813 132202813 10.1080/01947648.2017.1417934 132202813 ppf: 201 ppct: 19 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Returning Results to Family Members: Professional Duties in Genomics Research in the United States. aug: au: Fox, Dov Spencer, Emily Torkamani, Ali sug: subj: Ethics, Professional Genetic Research United States Research Subjects Truth Disclosure Extended Family Adult Middle Age Female Male United States Research Ethics Reproductive Health Medical Practice Hereditary Diseases Diagnosis Clinical Laboratories Treatment Complications, Delayed Prevention and Control Autopsy Death, Sudden Adult: 19-44 years Middle Aged: 45-64 years Female Male ab: This article critically appraises the ethical and legal duties to disclose findings to the family members of research participants. These family members stand to benefit in important ways from discoveries that can inform their own health and reproductive risks. However, careful appreciation of how medical research differs from clinical practice and of the uncertainties at stake in genomic research complicates any warning to relatives. Research laboratories should generally be immune from liability for failing to diagnose or disclose a genetic disorder in time to prevent adverse outcomes for a participant's family members or to return properly interpreted test results for even direct findings under investigation, let alone incidental ones. The only exception is where warning relatives of medical risks is very likely to prevent imminent harm and would not override known participant wishes. Genomic autopsy studies for sudden death satisfy these conditions of life-saving potential for relatives without disrespect to subjects. These are among the rare instances in which we conclude that offering results to family members is not just permissible but obligatory, not just as a moral matter but as a legal one. pubtype: Academic Journal doctype: case study Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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