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Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland

Background: Achieving high participation of communities representative of all sub-populations is needed in order to ensure broad applicability of biobank study findings. This study aimed to understand potentially mutable attitudes and opinions commonly correlated with biobank participation in order...

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Autores principales: Overby, Casey Lynnette, Maloney, Kristin A., Alestock, Tameka DeShawn, Chavez, Justin, Berman, David, Sharaf, Reem Maged, Fitzgerald, Tom, Kim, Eun-Young, Palmer, Kathleen, Shuldiner, Alan R., Mitchell, Braxton D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4600147/
https://www.ncbi.nlm.nih.gov/pubmed/26226006
http://dx.doi.org/10.3390/jpm5030264
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author Overby, Casey Lynnette
Maloney, Kristin A.
Alestock, Tameka DeShawn
Chavez, Justin
Berman, David
Sharaf, Reem Maged
Fitzgerald, Tom
Kim, Eun-Young
Palmer, Kathleen
Shuldiner, Alan R.
Mitchell, Braxton D.
author_facet Overby, Casey Lynnette
Maloney, Kristin A.
Alestock, Tameka DeShawn
Chavez, Justin
Berman, David
Sharaf, Reem Maged
Fitzgerald, Tom
Kim, Eun-Young
Palmer, Kathleen
Shuldiner, Alan R.
Mitchell, Braxton D.
author_sort Overby, Casey Lynnette
collection PubMed
description Background: Achieving high participation of communities representative of all sub-populations is needed in order to ensure broad applicability of biobank study findings. This study aimed to understand potentially mutable attitudes and opinions commonly correlated with biobank participation in order to inform approaches to promote participation in biobanks. Methods: Adults from two University of Maryland (UMD) Faculty Physicians, Inc. outpatient practices were invited to watch a video and complete a survey about a new biobank initiative. We used: Chi-square to assess the relationship between willingness to join the biobank and participant characteristics, other potentially mutable attitudes and opinions, and trust in the UMD. We also used t-test to assess the relationship with trust in medical research. We also prioritize proposed actions to improve attitudes and opinions about joining biobanks according to perceived responsiveness. Results: 169 participants completed the study, 51% of whom indicated a willingness to join the biobank. Willingness to join the biobank was not associated with age, gender, race, or education but was associated with respondent comfort sharing samples and clinical information, concerns related to confidentiality, potential for misuse of information, trust in UMD, and perceived health benefit. In ranked order, potential actions we surveyed that might alleviate some of these concerns include: increase chances to learn more about the biobank, increase opportunities to be updated, striving to put community concerns first, including involving community members as leaders of biobank research, and involving community members in decision making. Conclusions: This study identified several attitudes and opinions that influence decisions to join a biobank, including many concerns that could potentially be addressed by engaging community members. We also demonstrate our method of prioritizing ways to improve attitudes and opinions about joining a biobank according to perceived responsiveness.
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spelling pubmed-46001472015-10-15 Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland Overby, Casey Lynnette Maloney, Kristin A. Alestock, Tameka DeShawn Chavez, Justin Berman, David Sharaf, Reem Maged Fitzgerald, Tom Kim, Eun-Young Palmer, Kathleen Shuldiner, Alan R. Mitchell, Braxton D. J Pers Med Article Background: Achieving high participation of communities representative of all sub-populations is needed in order to ensure broad applicability of biobank study findings. This study aimed to understand potentially mutable attitudes and opinions commonly correlated with biobank participation in order to inform approaches to promote participation in biobanks. Methods: Adults from two University of Maryland (UMD) Faculty Physicians, Inc. outpatient practices were invited to watch a video and complete a survey about a new biobank initiative. We used: Chi-square to assess the relationship between willingness to join the biobank and participant characteristics, other potentially mutable attitudes and opinions, and trust in the UMD. We also used t-test to assess the relationship with trust in medical research. We also prioritize proposed actions to improve attitudes and opinions about joining biobanks according to perceived responsiveness. Results: 169 participants completed the study, 51% of whom indicated a willingness to join the biobank. Willingness to join the biobank was not associated with age, gender, race, or education but was associated with respondent comfort sharing samples and clinical information, concerns related to confidentiality, potential for misuse of information, trust in UMD, and perceived health benefit. In ranked order, potential actions we surveyed that might alleviate some of these concerns include: increase chances to learn more about the biobank, increase opportunities to be updated, striving to put community concerns first, including involving community members as leaders of biobank research, and involving community members in decision making. Conclusions: This study identified several attitudes and opinions that influence decisions to join a biobank, including many concerns that could potentially be addressed by engaging community members. We also demonstrate our method of prioritizing ways to improve attitudes and opinions about joining a biobank according to perceived responsiveness. MDPI 2015-07-28 /pmc/articles/PMC4600147/ /pubmed/26226006 http://dx.doi.org/10.3390/jpm5030264 Text en © 2015 by the authors; licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Overby, Casey Lynnette
Maloney, Kristin A.
Alestock, Tameka DeShawn
Chavez, Justin
Berman, David
Sharaf, Reem Maged
Fitzgerald, Tom
Kim, Eun-Young
Palmer, Kathleen
Shuldiner, Alan R.
Mitchell, Braxton D.
Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland
title Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland
title_full Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland
title_fullStr Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland
title_full_unstemmed Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland
title_short Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland
title_sort prioritizing approaches to engage community members and build trust in biobanks: a survey of attitudes and opinions of adults within outpatient practices at the university of maryland
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4600147/
https://www.ncbi.nlm.nih.gov/pubmed/26226006
http://dx.doi.org/10.3390/jpm5030264
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