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'That would be dreadful': The ethical, legal, and social challenges of sharing your Alzheimer's disease biomarker and genetic testing results with others.

ABSTRACT: Several large clinical trials are underway to discover therapies to delay or prevent the onset of dementia caused by Alzheimer's disease (AD). A common feature of these trials is that they are testing therapies in people who do not yet have changes in memory or thinking-that is, who are cognitively unimpaired-but who have a biologically defined risk of developing dementia caused by AD. When these trials eventually succeed, it is reasonable to expect the widespread adoption of biomarker and genetic testing of cognitively unimpaired individuals into clinical practice, as well as treatment prescribed to individuals at heightened risk. Here, we report results from two qualitative studies that sought to understand with whom, why, and how individuals share their AD biomarker and genetic testing results, respectively. We found that sharing is common within the confines of close relationships. However, when sharing outside such relationships, people have multiple concerns, including stigma and discrimination. These concerns highlight the need for additional legal protections and policy changes in anticipation of the coming transformation of AD clinical care.

SUBMITTER: Largent EA

PROVIDER: S-EPMC8132957 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundIn the asymptomatic "preclinical" phase of Alzheimer's disease (AD), abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed to participants in research settings, and biomarker testing and results disclosure will be implemented in clinical settings in the future. Biomarker disclosure has potential psychosocial benefits and harms, impacting affected individuals and their support person(s). Limited data are available about with whom research participants share their results, information that will be necessary to develop disclosure protocols and post-disclosure resources. Additionally, existing research has been conducted in largely White cohorts, limiting applicability to future clinical populations.MethodsWe enrolled a diverse cohort of 329 adults (184 non-Hispanic White and 145 Black/African American individuals) who previously participated in AD research. After reviewing a vignette describing a hypothetical biomarker research study, participants indicated their anticipated willingness to share biomarker results with loved ones, and what reactions they anticipated from others. Using mixed-methods analysis, we identified responses related to willingness to share results.ResultsA majority (78.7%) were willing to share their results with support persons. Many (59.6%) felt it would not be difficult to share, and most (90.6%) believed their loved ones would be supportive. The most common reasons for sharing were to prepare for possible future AD (41.0% of respondents), while the most common reason for not sharing was to avoid worrying loved ones (4.8% of respondents). A total of 7.3% of respondents related reasons regarding being unsure about sharing.DiscussionParticipants' interest in sharing results supports integrating support persons into AD biomarker research, and may help maximize potential benefits for participants. Communicating with this "dyad" of research participant and support person(s) may improve involvement in research, and help prepare for implementation of clinical biomarker testing by clarifying communication preferences and the influence of support persons on psychosocial outcomes.

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'That would be dreadful': The ethical, legal, and social challenges of sharing your Alzheimer's disease biomarker and genetic testing results with others.

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