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

Journal of Medical Ethics
Philippe A MelasCatharina Lavebratt

Abstract

To investigate empirically the motivations for not consenting to DNA biobanking in a Swedish population-based study and to discuss the implications. Structured questionnaires and semistructured interviews. A longitudinal epidemiological project (PART) ongoing since 1998 in Stockholm, Sweden. The DNA-collection wave took place during 2006-7. 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. Motivations behind refusing to consent to DNA biobanking, with subsequent focus on participants' explanations regarding this unwillingness. 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 interviewee...Continue Reading

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