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Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study
  1. Philippe A Melas1,
  2. Louise K Sjöholm1,
  3. Tord Forsner2,
  4. Maigun Edhborg3,
  5. Niklas Juth4,
  6. Yvonne Forsell2,
  7. Catharina Lavebratt1
  1. 1Department of Molecular Medicine and Surgery, Neurogenetics Unit, Karolinska Institutet, Stockholm, Sweden
  2. 2Department of Public Health Sciences, Public Health Epidemiology Unit, Karolinska Institutet, Stockholm, Sweden
  3. 3Department of Neurobiology, Caring Sciences and Society, Nursing Unit, Karolinska Institutet, Stockholm, Sweden
  4. 4Department of Learning, Informatics, Management and Ethics, Stockholm Centre for Healthcare Ethics, Karolinska Institutet, Stockholm, Sweden
  1. Correspondence to Dr Philippe A Melas, Karolinska Institute, Department of Molecular Medicine and Surgery, Neurogenetics Unit, CMM L8:00 Karolinska University Hospital, Stockholm 17176, Sweden; philippe.melas{at}ki.se

Abstract

Objectives To investigate empirically the motivations for not consenting to DNA biobanking in a Swedish population-based study and to discuss the implications.

Design Structured questionnaires and semistructured interviews.

Setting A longitudinal epidemiological project (PART) ongoing since 1998 in Stockholm, Sweden. The DNA-collection wave took place during 2006–7.

Participants 903 individuals completed the questionnaire (participation rate 36%) and 23 were interviewed. All individuals had participated in both non-genetic waves of the project, but refused to contribute saliva samples during the DNA-collection wave.

Main outcome measures Motivations behind refusing to consent to DNA biobanking, with subsequent focus on participants' explanations regarding this unwillingness.

Results Public refusal to consent to DNA biobanking, as revealed by the questionnaire, was mainly explained by a lack of personal relevance of DNA contribution and feelings of discomfort related to the DNA being used for purposes other than the respective study. Interviews of individuals representing the second motivation, revealed a significant mistrust of DNA biobank studies. The underlying beliefs and attitudes were associated with concerns about integrity, privacy, suspiciousness and insecurity. However, most interviewees were supportive of genetic research per se and interpreted their mistrust in the light of distressing environmental influences.

Conclusion The results suggest a need for guidelines on benefit sharing, as well as trustworthy and stable measures to maintain privacy, as a means for increasing personal relevance and trust among potential participants in genetic research. Measures taken from biobanks seem insufficient in maintaining and increasing trust, suggesting that broader societal measures should be taken.

  • confidentiality/privacy
  • general
  • informed consent
  • policy guidelines/institutional review boards/review committees
  • scientific research

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Footnotes

  • Contributors The study was designed by PAM, LKS, CL and YF. Quantitative data were gathered by PAM and LKS. Quantitative data were analysed by PAM and YF. Qualitative data were gathered by PAM. Qualitative data werer analysed by PAM, ME and TF. PAM wrote the paper. NJ reviewed and revised the manuscript from an ethical perspective. All authors discussed the results, read and commented on the manuscript. All authors had full access to all of the data in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis. Guarantor: PAM.

  • Funding This study was supported by grants from the Bodossaki Foundation, the Karolinska Institute Foundation, the Swedish Research Council – Medicine, Stockholm County Council and the Söderström–Königska Foundation at the Swedish Society of Medicine. None of these funding sources played any role in the study design, data collection, analysis, manuscript writing or manuscript submission.

  • Competing interests None.

  • Ethics approval PART and all of its featuring studies have been approved by the ethical committee at the Karolinska Institute as being in accordance with ethical standards. For this study, the authors had permission: (1) to contact all the DNA non-respondents who participated in PART wave 1 and wave 2; (2) to use all questionnaire information filled in by participants in wave 1 and wave 2 and (3) to approach individuals via telephone contact for the qualitative part of the study. For assuring anonymity, PART uses the ‘sequestering identifiers via key-coding’ method.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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