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“I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research

PURPOSE: To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. METHODS: We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asi...

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Autores principales: Lee, Sandra S.-J., Cho, Mildred K., Kraft, Stephanie A., Varsava, Nina, Gillespie, Katie, Ormond, Kelly E., Wilfond, Benjamin S., Magnus, David
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6289900/
https://www.ncbi.nlm.nih.gov/pubmed/29887604
http://dx.doi.org/10.1038/s41436-018-0032-6
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author Lee, Sandra S.-J.
Cho, Mildred K.
Kraft, Stephanie A.
Varsava, Nina
Gillespie, Katie
Ormond, Kelly E.
Wilfond, Benjamin S.
Magnus, David
author_facet Lee, Sandra S.-J.
Cho, Mildred K.
Kraft, Stephanie A.
Varsava, Nina
Gillespie, Katie
Ormond, Kelly E.
Wilfond, Benjamin S.
Magnus, David
author_sort Lee, Sandra S.-J.
collection PubMed
description PURPOSE: To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. METHODS: We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian and non-Hispanic White on the collection of biospecimens and EHR data for research. RESULTS: Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data. CONCLUSION: Considering that the potential misuse of EHR data is as great, if not greater than for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives and misconceptions about sources of patient information to build trust in research relationships.
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spelling pubmed-62899002018-12-12 “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research Lee, Sandra S.-J. Cho, Mildred K. Kraft, Stephanie A. Varsava, Nina Gillespie, Katie Ormond, Kelly E. Wilfond, Benjamin S. Magnus, David Genet Med Article PURPOSE: To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. METHODS: We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian and non-Hispanic White on the collection of biospecimens and EHR data for research. RESULTS: Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data. CONCLUSION: Considering that the potential misuse of EHR data is as great, if not greater than for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives and misconceptions about sources of patient information to build trust in research relationships. 2018-06-11 2019-01 /pmc/articles/PMC6289900/ /pubmed/29887604 http://dx.doi.org/10.1038/s41436-018-0032-6 Text en http://www.nature.com/authors/editorial_policies/license.html#terms Users may view, print, copy, and download text and data-mine the content in such documents, for the purposes of academic research, subject always to the full Conditions of use:http://www.nature.com/authors/editorial_policies/license.html#terms
spellingShingle Article
Lee, Sandra S.-J.
Cho, Mildred K.
Kraft, Stephanie A.
Varsava, Nina
Gillespie, Katie
Ormond, Kelly E.
Wilfond, Benjamin S.
Magnus, David
“I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research
title “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research
title_full “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research
title_fullStr “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research
title_full_unstemmed “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research
title_short “I Don’t Want to be Henrietta Lacks”: Diverse Patient Perspectives on Donating Biospecimens for Precision Medicine Research
title_sort “i don’t want to be henrietta lacks”: diverse patient perspectives on donating biospecimens for precision medicine research
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6289900/
https://www.ncbi.nlm.nih.gov/pubmed/29887604
http://dx.doi.org/10.1038/s41436-018-0032-6
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