Cell and Tissue Banking

, Volume 9, Issue 1, pp 55–65 | Cite as

Attitudes and perceptions of patients towards methods of establishing a DNA biobank

  • Jill M. Pulley
  • Margaret M. Brace
  • Gordon R. Bernard
  • Dan R. Masys


Background This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens (‘DNA Databank’ project). Method A pre-tested, 38-item questionnaire was mailed to a random sample of 5,000 inpatients, outpatients, and emergency department patients. Results Approximately 20% of patients responded (n = 1003). Most were comfortable with anonymized genetic information being used for research (89.3%) and supported the potential benefits (98.7%). A binary logistic regression on the level of comfort with the DNA program shows that the variability in respondents’ feelings about the program can best be explained by beliefs, age, and health status. Respondents were attitudinally segmented into 5 distinct categories. Conclusions These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. The effects of prior beliefs would benefit from further exploration.


Biobank Community DNA Patient attitudes 



Vanderbilt University Medical Center



We would like to thank Dan Byrne and Sheryl Zhong, VUMC Department of Biostatistics, for their assistance with the statistical analyses presented in this article. This article contains original data; Jill Pulley and Margaret Brace have had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. No external funding was provided for this study. Authors do not have financial conflicts of interest.


  1. Burton B (2002) Proposed genetic database on Tongans opposed. BMJ 324(7335):443PubMedCrossRefGoogle Scholar
  2. Collins FS, Green ED, Guttmacher MS, Guyer MS (2003) A vision for the future of genomics research. Nature 422(6934):835–847PubMedCrossRefGoogle Scholar
  3. Dalton R (2002) Tribe blasts ‘exploitation’ of blood samples. Nature 420(6912):111PubMedCrossRefGoogle Scholar
  4. Edwards P, Cooper R, Roberts I, Frost C (2005) Meta-analysis of randomised trials of monetary incentives and response to mailed questionnaires. J Epidemiol Community Health 59(11):987–999 ReviewPubMedCrossRefGoogle Scholar
  5. The Gallup Organization (2004) Public attitudes toward medical privacy. Sept 2000. Available online at
  6. Godard B, Marshall J, Laberge C, Knoppers BM (2004) Strategies for consulting with the community: the cases of four large-scale genetic databases. Sci Eng Ethics 10(3):457–477PubMedCrossRefGoogle Scholar
  7. Hauksson P (1999) Icelanders opt out of genetic database. Nature 400(6746):707–708PubMedCrossRefGoogle Scholar
  8. Hodgson J (1998) New ‘deCODE bill’ restarts controversy. Nat Biotechnol 16(9):816PubMedGoogle Scholar
  9. Holtzman NA, Bernhardt BA, Mountcastle-Shah E, Rodgers JE, Tambor E, Geller G (2005) The quality of media reports on discoveries related to human genetic diseases. Commun Genet 8(3):133–144CrossRefGoogle Scholar
  10. Kettis-Lindblad A, Ring L, Viberth E, Hansson M (2005) Genetic research and donation of tissue samples to biobanks: what do potential sample donors in the Swedish general public think? Eur J Public Health [Epub ahead of print]:1–8Google Scholar
  11. Kotaniemi JT, Hassi J, Kataja M, Jonsson E, Laitinen LA, Sovijarvi AR, Lundback B (2001) Does non-responder bias have a significant effect on the results in a postal questionnaire study? Eur J Epidemiol 17(9):809–817PubMedCrossRefGoogle Scholar
  12. Matsui K, Kita Y, Ueshima H (2005) Informed consent, participation in, withdrawal from a population based cohort study involving genetic analysis. J Med Ethics 31:385–392PubMedCrossRefGoogle Scholar
  13. McQuillan GM, Porter KS, Agelli M, Kington R (2003) Consent for genetic research in a general population: the NHANES experience. Genet Med 5(1):35–42PubMedCrossRefGoogle Scholar
  14. Merz JF, McGee GE, Sankar P (2004) ‘Iceland Inc.’?: On the ethics of commercial population genomics. Soc Sci Med 58(6):1201–1209PubMedCrossRefGoogle Scholar
  15. Office for Human Research Protections, Department of Health and Human Services (2004) Guidance on research involving coded private information or biological specimens. Aug 10, 2004. Available online at
  16. Office on Women’s Health, US Department of Health and Human Services (2004) National action plan for breast cancer. Accessed 9/26/04, at
  17. Tutton R, Kaye J, Hoeyer K (2004) Governing UK biobank: the importance of ensuring public trust. Trends Biotechnol 22(6):284–285PubMedCrossRefGoogle Scholar
  18. Wang SS, Fridinger F, Sheedy KM, Khoury MJ (2001) Public attitudes regarding the donation and storage of blood specimens for genetic research. Commun Genet 4(1):18–26CrossRefGoogle Scholar
  19. Wendler D, Emanuel E (2002) The debate over research on stored biological samples: what do sources think? Arch Intern Med 162:1457–1462PubMedCrossRefGoogle Scholar
  20. Wong ML, Chia KS, Yam WM, Teodoro GR, Lau KW (2004) Willingness to donate blood samples for genetic research: a survey from a community in Singapore. Clin Genet 65:45–51PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2007

Authors and Affiliations

  • Jill M. Pulley
    • 1
  • Margaret M. Brace
    • 2
  • Gordon R. Bernard
    • 2
  • Dan R. Masys
    • 2
  1. 1.Vanderbilt University Medical Center, Vanderbilt Office of ResearchNashvilleUSA
  2. 2.Vanderbilt University Medical Center, Vanderbilt Office of ResearchNashvilleUSA

Personalised recommendations