Informing relatives of their genetic risk: an examination of the Belgian legal context

Abstract

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Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda

“…Other countries like Australia, Britain and France have legislation that allows healthcare professionals to disclose genetic information considered beneficial to family members in case the individual tested is not willing to do so [52][53][54]. While current Belgian legislation coupled, with international precedent, may provide sufficient justification to establish a duty to inform relatives of their genetic risk in some cases [55].…”

“…A significant amount of research has been conducted in the fields of genetics and genomics. Associated findings have contributed to the global debate on return of GGR results [9][10][11][12][13][14]. Although international policies for return of individual genetic research findings are still evolving, there is general consensus for feedback of results.…”

Feedback of Individual Genetic and Genomics Research Results: A Qualitative Study Involving Grassroots Communities in Uganda

“…It has also been recommended that it is imperative that the privacy and confidentiality of the person enrolling in the study should be respected but in cases where there is benefit in sharing results with family members, the original participant should grant permission because just like feedback to individuals, feedback should not be imposed on family members, but should be based on their voluntary consent [14]. A study involving REC chairpersons in the USA showed that 62% of the REC chairs agreed that participants should be informed that their results could be offered to family members and asked to indicate their choice, but such a statement may not be adequate informed consent [41].…”

“…A significant amount of research has been conducted with resultant literature and global debate on return of genetic and genomics testing results [9][10][11][12][13][14]. Despite the fact that international policies for return of individual genetic research findings are still evolving, general consensus appears to be that in order to consider findings for feedback a number of criteria need to be met including the ability to assess the evidence base for potentially disease causing genetic variants in relation to the concerned population(s); assessment of whether the particular finding is beneficial to the individual; ensuring that patients are appropriately informed of the implications of the findings for their disease or treatment, and referral for follow-up care while seeking guidance of the Research Ethics Committee (REC) [15].…”

Comment on Informing relatives of their genetic risk: an examination of the Belgian context

“…In 2022, the European Journal of Human Genetics published an article by Amicia Philips, Thomas Bronselaer, Pascal Borry, Ine Van Hoyweghen, Danya F Vears, Laurent Pasquier and Stefaan Callens: ‘Informing relatives of their genetic risk: an examination of the Belgian legal context’ [ 1 ]. With an original and thought provoking insight into one of the most topical and relevant medico-legal challenges arising with the advent of a new genetic era, this article offers a well-informed and accessible analysis of the many ethical and legal issues presented in this area, as well as the practical questions arising for physicians in medical practice.…”