Communicating genetic information to family members: analysis of consent forms for diagnostic genomic sequencing
AuthorPhillips, A; Niemiec, E; Howard, HC; Kagkelari, K; Borry, P; Vears, DF
Source TitleEuropean Journal of Human Genetics
PublisherNATURE PUBLISHING GROUP
University of Melbourne Author/sVears, Danya
AffiliationMelbourne Law School
Document TypeJournal Article
CitationsPhillips, A., Niemiec, E., Howard, H. C., Kagkelari, K., Borry, P. & Vears, D. F. (2020). Communicating genetic information to family members: analysis of consent forms for diagnostic genomic sequencing. EUROPEAN JOURNAL OF HUMAN GENETICS, 28 (9), pp.1160-1167. https://doi.org/10.1038/s41431-020-0627-7.
Access StatusAccess this item via the Open Access location
Open Access URLhttps://europepmc.org/articles/PMC7608457?pdf=render
Communicating results from genomic sequencing to family members can play an essential role allowing access to surveillance, prevention, treatment or prophylactic measures. Yet, many patients struggle with communication of these results and it is unclear to what extent this is discussed during the consent process. We conducted an online systematic search and used content analysis to explore how consent forms for genomic sequencing address communication of genetic information to family members. Our search yielded 68 consent forms from 11 countries. Although 57 forms alluded to the familial nature of results, forms varied in their discussion of the potential familial implications of results. Only 11 addressed communication of genetic information with family members, with differences in who would be responsible for this process. Several forms offered patients options regarding communication, even in countries where national guidelines and legislation allow for the disclosure of results in the absence of patient consent. These findings are concerning because they show how forms may potentially mislead patients and health care professionals about whether communication is permissible in cases where the patient does not consent. We suggest that providers and health care professionals reconsider how consent forms address communicating genetic information to family members.
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