TY - JOUR

T1 - Communicating genetic information to family members

T2 - analysis of consent forms for diagnostic genomic sequencing

AU - Phillips, Amicia

AU - Niemiec, Emilia

AU - Howard, Heidi Carmen

AU - Kagkelari, Kalliopi

AU - Borry, Pascal

AU - Vears, Danya F.

N1 - Funding Information: Funding DV is a Postdoctoral Research Fellow of the Research Foundation–Flanders (FWO Vlaanderen) and acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program. Publisher Copyright: © 2020, The Author(s), under exclusive licence to European Society of Human Genetics.

PY - 2020/9/1

Y1 - 2020/9/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85084121332&partnerID=8YFLogxK

U2 - 10.1038/s41431-020-0627-7

DO - 10.1038/s41431-020-0627-7

M3 - Journal article

C2 - 32341470

AN - SCOPUS:85084121332

VL - 28

SP - 1160

EP - 1167

JO - European Journal of Human Genetics

JF - European Journal of Human Genetics

SN - 1018-4813

IS - 9

ER -