Amanda M Willis, Florence Chiew, Philomena Horsley, Sommon Klumsathian, Ezekiel Ling, Chris Jacobs, Paul Lacaze, Jane Tiller, Mary-Anne Young
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Older research participants are motivated to receive genetic results for the benefit of younger relatives.
The benefit of returning medically actionable genetic research findings is widely recognised. However, there is uncertainty regarding the return of results to older people (>70 years), given the reduced actionability in this age group. The goal of this study was to assess whether older people were motivated to receive genetic results, primarily for the benefit of younger relatives. Semi-structured interviews were conducted with individuals aged ≥70 enrolled in the ASPirin in Reducing Events in the Elderly (ASPREE) study. Participants received medically actionable genetic results in Hereditary Breast and Ovarian Cancer, Lynch syndrome or Familial Hypercholesterolaemia genes. Data were analysed using reflexive thematic analysis. Sixteen individuals were interviewed (mean age 82 years). While participants recognised the limited actionability of the genetic results for themselves, the perceived benefits for younger family members motivated them to receive genetic findings and share with relatives. Participants reported positive experiences of receiving genetic results, underpinned by their existing relationship with the ASPREE trial, and reported that their age promoted their adaptation to results. These findings illustrate positive impact from returning genetic research results to older research participants and suggest that older people desire genetic information to benefit their younger family members.
期刊介绍:
The European Journal of Human Genetics is the official journal of the European Society of Human Genetics, publishing high-quality, original research papers, short reports and reviews in the rapidly expanding field of human genetics and genomics. It covers molecular, clinical and cytogenetics, interfacing between advanced biomedical research and the clinician, and bridging the great diversity of facilities, resources and viewpoints in the genetics community.
Key areas include:
-Monogenic and multifactorial disorders
-Development and malformation
-Hereditary cancer
-Medical Genomics
-Gene mapping and functional studies
-Genotype-phenotype correlations
-Genetic variation and genome diversity
-Statistical and computational genetics
-Bioinformatics
-Advances in diagnostics
-Therapy and prevention
-Animal models
-Genetic services
-Community genetics