Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study

• Published in: Journal of medical ethics Vol. 36; no. 2; pp. 93 - 98
• Main Authors: Melas, Philippe A, Sjöholm, Louise K, Forsner, Tord, Edhborg, Maigun, Juth, Niklas, Forsell, Yvonne, Lavebratt, Catharina
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Institute of Medical Ethics 01.02.2010; Institute of Medical Ethics and BMJ Publishing Group; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Age; Bioethics; Biological specimen banks; Biological Specimen Banks - ethics; confidentiality/privacy; Consent; Cooperation; Denial; Deoxyribonucleic acid; DNA; Feedback; Genetic engineering; Genetic research; Genetic Research - ethics; Genetic testing; Genetics; Guidelines as Topic; Human genetics; Humans; Informed consent; Informed consent (Medical law); Informed Consent - ethics; Interviews; Longitudinal Studies; Medical genetics; Medicin och hälsovetenskap; Motivation research; Participation; policy guidelines/institutional review boards/review committees; Privacy; Questionnaires; Refusal to Participate - ethics; Saliva; scientific research; Studies; Sweden; Tissue and Organ Procurement - ethics; Sweden; United States
• ISSN: 0306-6800; 1473-4257; 1473-4257
• DOI: 10.1136/jme.2009.032367

ObjectivesTo investigate empirically the motivations for not consenting to DNA biobanking in a Swedish population-based study and to discuss the implications.DesignStructured questionnaires and semistructured interviews.SettingA longitudinal epidemiological project (PART) ongoing since 1998 in Stockholm, Sweden. The DNA-collection wave took place during 2006–7.Participants903 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 measuresMotivations behind refusing to consent to DNA biobanking, with subsequent focus on participants' explanations regarding this unwillingness.ResultsPublic 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.ConclusionThe 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.