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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

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...

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Autores principales: Largent, Emily A, Stites, Shana D, Harkins, Kristin, Karlawish, Jason
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8132957/
https://www.ncbi.nlm.nih.gov/pubmed/34040780
http://dx.doi.org/10.1093/jlb/lsab004
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author Largent, Emily A
Stites, Shana D
Harkins, Kristin
Karlawish, Jason
author_facet Largent, Emily A
Stites, Shana D
Harkins, Kristin
Karlawish, Jason
author_sort Largent, Emily A
collection PubMed
description 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.
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spelling pubmed-81329572021-05-25 ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others Largent, Emily A Stites, Shana D Harkins, Kristin Karlawish, Jason J Law Biosci Original Article 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. Oxford University Press 2021-05-19 /pmc/articles/PMC8132957/ /pubmed/34040780 http://dx.doi.org/10.1093/jlb/lsab004 Text en © The Author(s) 2021. Published by Oxford University Press on behalf of Duke University School of Law, Harvard Law School, Oxford University Press, and Stanford Law School. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution NonCommercial-NoDerivs licence (http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) ), which permits non-commercial reproduction and distribution of the work, in any medium, provided the original work is not altered or transformed in any way, and that the work properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Original Article
Largent, Emily A
Stites, Shana D
Harkins, Kristin
Karlawish, Jason
‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others
title ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others
title_full ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others
title_fullStr ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others
title_full_unstemmed ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others
title_short ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others
title_sort ‘that would be dreadful’: the ethical, legal, and social challenges of sharing your alzheimer’s disease biomarker and genetic testing results with others
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8132957/
https://www.ncbi.nlm.nih.gov/pubmed/34040780
http://dx.doi.org/10.1093/jlb/lsab004
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