Department of Molecular Medicine and Surgery, Neurogenetics Unit, Karolinska Institutet, Stockholm, Sweden.
J Med Ethics. 2010 Feb;36(2):93-8. doi: 10.1136/jme.2009.032367.
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 interviewees were supportive of genetic research per se and interpreted their mistrust in the light of distressing environmental influences.
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.
在一项瑞典基于人群的研究中，从实证角度调查不同意 DNA 生物库的动机，并讨论其影响。
结构化问卷和半结构化访谈。
自 1998 年以来一直在瑞典斯德哥尔摩进行的一项纵向流行病学项目（PART）。DNA 采集浪潮发生在 2006-7 年期间。
903 名个体完成了问卷（参与率 36%），23 名个体接受了访谈。所有个体都参加了该项目的前两次非遗传浪潮，但在 DNA 采集浪潮期间拒绝提供唾液样本。
拒绝同意 DNA 生物库的背后动机，随后重点关注参与者对此不情愿的解释。
问卷调查显示，公众拒绝同意 DNA 生物库，主要是由于 DNA 捐赠与个人相关性不大，以及对 DNA 被用于除研究目的以外的其他目的而感到不适。对代表第二种动机的个体进行访谈，揭示了对 DNA 生物库研究的明显不信任。潜在的信念和态度与对完整性、隐私、可疑性和不安全性的担忧有关。然而，大多数受访者本身支持遗传研究，并从令人痛苦的环境影响的角度来解释他们的不信任。
研究结果表明，需要制定利益共享指南，以及值得信赖和稳定的措施来维护隐私，以提高遗传研究中潜在参与者的个人相关性和信任。从生物库采取的措施似乎不足以维持和增加信任，这表明应采取更广泛的社会措施。
