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.
abstract: 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.
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. coverby@medicine.umaryland.edu.|Center for Health-related Informatics and Bioimaging, University of Maryland, Baltimore, MD 21201, USA. coverby@medicine.umaryland.edu.
authors.forename: Casey Lynnette
authors.initials: CL
authors.lastname: Overby
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. kmaloney1@medicine.umaryland.edu.
authors.forename: Kristin A
authors.initials: KA
authors.lastname: Maloney
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. talestoc@medicine.umaryland.edu.
authors.forename: Tameka DeShawn
authors.initials: TD
authors.lastname: Alestock
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. juscha1@umbc.edu.|University of Maryland, Baltimore County, Baltimore, MD 21250, USA. juscha1@umbc.edu.
authors.forename: Justin
authors.initials: J
authors.lastname: Chavez
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. david.berman@kcl.ac.uk.|King's College London, London WC2R 2LS, UK. david.berman@kcl.ac.uk.
authors.forename: David
authors.initials: D
authors.lastname: Berman
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. rsharaf@medicine.umaryland.edu.
authors.forename: Reem Maged
authors.initials: RM
authors.lastname: Sharaf
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. tfitzger@medicine.umaryland.edu.
authors.forename: Tom
authors.initials: T
authors.lastname: Fitzgerald
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. eykim@inje.ac.kr.|Department of Clinical Pharmacology, Inje University Busan Paik Hospital, Busan 614-735, Korea. eykim@inje.ac.kr.
authors.forename: Eun-Young
authors.initials: EY
authors.lastname: Kim
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. kpalmer@medicine.umaryland.edu.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Palmer
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. ashuldin@medicine.umaryland.edu.
authors.forename: Alan R
authors.initials: AR
authors.lastname: Shuldiner
authors.affiliation: Program in Personalized & Genomic Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD 21201, USA. bmitchel@medicine.umaryland.edu.|Geriatric Research and Education Clinical Center, Veterans Affairs Maryland Health Care System, Baltimore, MD 21201, USA. bmitchel@medicine.umaryland.edu.
authors.forename: Braxton D
authors.initials: BD
authors.lastname: Mitchell
keywords: biobank; biorepository; data sharing; preferences; public opinion; research participation; survey; trust