A roadmap for precision medicine research recruitment: Empirical assessment of the public's willingness to participate

Kelsey Moriarty; Susan M. Wolf; Patricia M. Veach; Bonnie S LeRoy; Ian M. MacFarlane; Heather A. Zierhut

doi:10.2217/pme-2019-0125

A roadmap for precision medicine research recruitment: Empirical assessment of the public's willingness to participate

Kelsey Moriarty, Susan M. Wolf, Patricia M. Veach, Bonnie S LeRoy, Ian M. MacFarlane, Heather A. Zierhut

Research output: Contribution to journal › Article › peer-review

1 Scopus citations

Abstract

Aim: Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Materials & methods: Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. Results: Few respondents had heard of ‘precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent expressed hypothetical willingness to participate in precision medicine research. Significant predictors of willingness were: comfort with unconditional research; perceiving precision medicine research as beneficial, trustworthy and confidential; having a graduate degree; comfort with self- but not family-participation; and familiarity with precision/personalized medicine. Conclusion: This study identified predictors of hypothetical willingness to participate in precision medicine research. Alternative recruitment strategies are needed.

Original language	English (US)
Pages (from-to)	345-359
Number of pages	15
Journal	Personalized Medicine
Volume	17
Issue number	5
DOIs	https://doi.org/10.2217/pme-2019-0125
State	Published - Sep 2020

Bibliographical note

Funding Information:
This project was funded in part by the University of Minnesota’s Minnesota Precision Medicine Collaboration (MPMC). Additional funding for Susan Wolf’s contribution was provided by National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) grant 1R01HG008605. All views expressed in this paper are those of the authors, not the funders. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.

Publisher Copyright:
© 2020 Future Medicine Ltd.. All rights reserved.

Keywords

genetics studies
genomics studies
personalized medicine
precision medicine
recruitment

Access

10.2217/pme-2019-0125

OpenUrl availability

Full text

Cite this

@article{fa39489b9ee942c8b97fe0f9b1cc7079,

title = "A roadmap for precision medicine research recruitment: Empirical assessment of the public's willingness to participate",

abstract = "Aim: Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Materials & methods: Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. Results: Few respondents had heard of {\textquoteleft}precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent expressed hypothetical willingness to participate in precision medicine research. Significant predictors of willingness were: comfort with unconditional research; perceiving precision medicine research as beneficial, trustworthy and confidential; having a graduate degree; comfort with self- but not family-participation; and familiarity with precision/personalized medicine. Conclusion: This study identified predictors of hypothetical willingness to participate in precision medicine research. Alternative recruitment strategies are needed.",

keywords = "genetics studies, genomics studies, personalized medicine, precision medicine, recruitment",

author = "Kelsey Moriarty and Wolf, {Susan M.} and Veach, {Patricia M.} and LeRoy, {Bonnie S} and MacFarlane, {Ian M.} and Zierhut, {Heather A.}",

note = "Funding Information: This project was funded in part by the University of Minnesota{\textquoteright}s Minnesota Precision Medicine Collaboration (MPMC). Additional funding for Susan Wolf{\textquoteright}s contribution was provided by National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) grant 1R01HG008605. All views expressed in this paper are those of the authors, not the funders. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript. Publisher Copyright: {\textcopyright} 2020 Future Medicine Ltd.. All rights reserved.",

year = "2020",

month = sep,

doi = "10.2217/pme-2019-0125",

language = "English (US)",

volume = "17",

pages = "345--359",

journal = "Personalized Medicine",

issn = "1741-0541",

publisher = "Future Medicine Ltd.",

number = "5",

}

TY - JOUR

T1 - A roadmap for precision medicine research recruitment

T2 - Empirical assessment of the public's willingness to participate

AU - Moriarty, Kelsey

AU - Wolf, Susan M.

AU - Veach, Patricia M.

AU - LeRoy, Bonnie S

AU - MacFarlane, Ian M.

AU - Zierhut, Heather A.

N1 - Funding Information: This project was funded in part by the University of Minnesota’s Minnesota Precision Medicine Collaboration (MPMC). Additional funding for Susan Wolf’s contribution was provided by National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) grant 1R01HG008605. All views expressed in this paper are those of the authors, not the funders. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript. Publisher Copyright: © 2020 Future Medicine Ltd.. All rights reserved.

PY - 2020/9

Y1 - 2020/9

N2 - Aim: Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Materials & methods: Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. Results: Few respondents had heard of ‘precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent expressed hypothetical willingness to participate in precision medicine research. Significant predictors of willingness were: comfort with unconditional research; perceiving precision medicine research as beneficial, trustworthy and confidential; having a graduate degree; comfort with self- but not family-participation; and familiarity with precision/personalized medicine. Conclusion: This study identified predictors of hypothetical willingness to participate in precision medicine research. Alternative recruitment strategies are needed.

AB - Aim: Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Materials & methods: Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. Results: Few respondents had heard of ‘precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent expressed hypothetical willingness to participate in precision medicine research. Significant predictors of willingness were: comfort with unconditional research; perceiving precision medicine research as beneficial, trustworthy and confidential; having a graduate degree; comfort with self- but not family-participation; and familiarity with precision/personalized medicine. Conclusion: This study identified predictors of hypothetical willingness to participate in precision medicine research. Alternative recruitment strategies are needed.

KW - genetics studies

KW - genomics studies

KW - personalized medicine

KW - precision medicine

KW - recruitment

UR - http://www.scopus.com/inward/record.url?scp=85090921060&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85090921060&partnerID=8YFLogxK

U2 - 10.2217/pme-2019-0125

DO - 10.2217/pme-2019-0125

M3 - Article

C2 - 32804044

AN - SCOPUS:85090921060

SN - 1741-0541

VL - 17

SP - 345

EP - 359

JO - Personalized Medicine

JF - Personalized Medicine

IS - 5

ER -

A roadmap for precision medicine research recruitment: Empirical assessment of the public's willingness to participate

Abstract

Bibliographical note

Keywords

Access

OpenUrl availability

Other files and links

Fingerprint

Cite this