Community consultation and communication for a population-based DNA biobank: The marshfield clinic personalized medicine research project

Catherine A. McCarty, Donna Chapman-Stone, Teresa Derfus, Philip F. Giampietro, Norman Fost, Tom Berger, Phil Boehning, Sharon Bredl, Margaret Brubaker, Margy Frey, Jodie Gardner, Phil Hein, Nancy Kaster, Colleen Kelly, Mike Kobs, Norm Kommer, Darlene Krake, Mark Krueger, Julie Levelius, Jerry MinorMike Paul, Marlin Schneider, Scott Schultz, Jean Schwanebeck

Research output: Contribution to journalArticle

Abstract

The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials.

Original languageEnglish (US)
Pages (from-to)3026-3033
Number of pages8
JournalAmerican Journal of Medical Genetics, Part A
Volume146
Issue number23
DOIs
StatePublished - Dec 1 2008
Externally publishedYes

Fingerprint

Precision Medicine
Referral and Consultation
Communication
DNA
Focus Groups
Research
Population
Research Personnel
Research Ethics Committees
Confidentiality
Medical Genetics
Demography

Keywords

  • Consumer participation
  • Ethics consultation
  • Genetics

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics

Cite this

Community consultation and communication for a population-based DNA biobank : The marshfield clinic personalized medicine research project. / McCarty, Catherine A.; Chapman-Stone, Donna; Derfus, Teresa; Giampietro, Philip F.; Fost, Norman; Berger, Tom; Boehning, Phil; Bredl, Sharon; Brubaker, Margaret; Frey, Margy; Gardner, Jodie; Hein, Phil; Kaster, Nancy; Kelly, Colleen; Kobs, Mike; Kommer, Norm; Krake, Darlene; Krueger, Mark; Levelius, Julie; Minor, Jerry; Paul, Mike; Schneider, Marlin; Schultz, Scott; Schwanebeck, Jean.

In: American Journal of Medical Genetics, Part A, Vol. 146, No. 23, 01.12.2008, p. 3026-3033.

Research output: Contribution to journalArticle

McCarty, CA, Chapman-Stone, D, Derfus, T, Giampietro, PF, Fost, N, Berger, T, Boehning, P, Bredl, S, Brubaker, M, Frey, M, Gardner, J, Hein, P, Kaster, N, Kelly, C, Kobs, M, Kommer, N, Krake, D, Krueger, M, Levelius, J, Minor, J, Paul, M, Schneider, M, Schultz, S & Schwanebeck, J 2008, 'Community consultation and communication for a population-based DNA biobank: The marshfield clinic personalized medicine research project', American Journal of Medical Genetics, Part A, vol. 146, no. 23, pp. 3026-3033. https://doi.org/10.1002/ajmg.a.32559
McCarty, Catherine A. ; Chapman-Stone, Donna ; Derfus, Teresa ; Giampietro, Philip F. ; Fost, Norman ; Berger, Tom ; Boehning, Phil ; Bredl, Sharon ; Brubaker, Margaret ; Frey, Margy ; Gardner, Jodie ; Hein, Phil ; Kaster, Nancy ; Kelly, Colleen ; Kobs, Mike ; Kommer, Norm ; Krake, Darlene ; Krueger, Mark ; Levelius, Julie ; Minor, Jerry ; Paul, Mike ; Schneider, Marlin ; Schultz, Scott ; Schwanebeck, Jean. / Community consultation and communication for a population-based DNA biobank : The marshfield clinic personalized medicine research project. In: American Journal of Medical Genetics, Part A. 2008 ; Vol. 146, No. 23. pp. 3026-3033.
@article{556dc99c1cce4bf78c7510a3164ce2e1,
title = "Community consultation and communication for a population-based DNA biobank: The marshfield clinic personalized medicine research project",
abstract = "The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials.",
keywords = "Consumer participation, Ethics consultation, Genetics",
author = "McCarty, {Catherine A.} and Donna Chapman-Stone and Teresa Derfus and Giampietro, {Philip F.} and Norman Fost and Tom Berger and Phil Boehning and Sharon Bredl and Margaret Brubaker and Margy Frey and Jodie Gardner and Phil Hein and Nancy Kaster and Colleen Kelly and Mike Kobs and Norm Kommer and Darlene Krake and Mark Krueger and Julie Levelius and Jerry Minor and Mike Paul and Marlin Schneider and Scott Schultz and Jean Schwanebeck",
year = "2008",
month = "12",
day = "1",
doi = "10.1002/ajmg.a.32559",
language = "English (US)",
volume = "146",
pages = "3026--3033",
journal = "American Journal of Medical Genetics, Part A",
issn = "1552-4825",
publisher = "Wiley-Liss Inc.",
number = "23",

}

TY - JOUR

T1 - Community consultation and communication for a population-based DNA biobank

T2 - The marshfield clinic personalized medicine research project

AU - McCarty, Catherine A.

AU - Chapman-Stone, Donna

AU - Derfus, Teresa

AU - Giampietro, Philip F.

AU - Fost, Norman

AU - Berger, Tom

AU - Boehning, Phil

AU - Bredl, Sharon

AU - Brubaker, Margaret

AU - Frey, Margy

AU - Gardner, Jodie

AU - Hein, Phil

AU - Kaster, Nancy

AU - Kelly, Colleen

AU - Kobs, Mike

AU - Kommer, Norm

AU - Krake, Darlene

AU - Krueger, Mark

AU - Levelius, Julie

AU - Minor, Jerry

AU - Paul, Mike

AU - Schneider, Marlin

AU - Schultz, Scott

AU - Schwanebeck, Jean

PY - 2008/12/1

Y1 - 2008/12/1

N2 - The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials.

AB - The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB. Ongoing communication with study subjects, who consent on the condition that personal genetic results will not be disclosed, takes place through a newsletter that is distributed twice yearly, community talks and media coverage. Most focus group participants were concerned about the confidentiality of both their medical and genetic data. Focus group discussions with eligible residents who elected not to participate in PMRP revealed that many knew very little about the project, but thought that too much information had been provided, leading them to believe that it would take too long for them to understand and enroll in the study. In conclusion, an engaged community advisory group can provide a sounding board to study investigators for many study issues and can provide guidance for broader communication activities. Researchers need to balance the provision of information for potential subjects to make informed decisions about study participation, with respect for individuals' time to read and interpret study materials.

KW - Consumer participation

KW - Ethics consultation

KW - Genetics

UR - http://www.scopus.com/inward/record.url?scp=57149115791&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=57149115791&partnerID=8YFLogxK

U2 - 10.1002/ajmg.a.32559

DO - 10.1002/ajmg.a.32559

M3 - Article

C2 - 19006210

AN - SCOPUS:57149115791

VL - 146

SP - 3026

EP - 3033

JO - American Journal of Medical Genetics, Part A

JF - American Journal of Medical Genetics, Part A

SN - 1552-4825

IS - 23

ER -