Communicating Genetic Information to Family Members: Analysis of Consent Forms for Diagnostic Genomic Sequencing
Amicia Phillips, Emilia Niemiec, Heidi Carmen Howard, Kalliopi Kagkelari, Pascal Borry, Danya F Vears
European Journal of Human Genetics | Springer Nature [academic journals on nature.com] | Published : 2020
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. On..View full abstract
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.