“如果我能帮上忙,我很高兴”。公众对冰岛未来药物和基因疗法的看法。

Community genetics Pub Date : 2008-01-01 Epub Date: 2008-01-15 DOI:10.1159/000111634
Janine M Traulsen, Ingunn Bjornsdóttir, Anna Birna Almarsdóttir
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引用次数: 4

摘要

目的:探讨当前和未来社会对医学和药物治疗(包括基因治疗)的认知。背景:经过近一年的全国辩论,冰岛议会于1998年通过了《卫生部门数据库法》。在冰岛,没有任何一个问题像这个数据库那样引起如此多的争论。尽管生物伦理学领域的流行和科学文献激增,但关于“外行”对辩论的贡献的研究仍然很少。方法:采用定性研究方法。进行焦点小组(FG),然后与FG主持人进行一对一访谈。参与者被要求对未来的情景发表评论,其中包括对未来40年人类基因组计划后果的预测。参与者:42人参加了冰岛的8次fg。每组结束后,冰岛主持人都接受了英语采访。结论:公众对药物和基因治疗的未来持相对乐观的态度。这种乐观的原因可以从对福利国家和医疗体系的基本信任和信念中找到。这些结果与在其他国家进行的研究不一致,在这些国家,公众似乎关注的是基因研究的负面影响和对隐私的威胁。大多数与会者对社会和公平问题方面的潜在问题表示关注,而基于生物伦理学修辞的HSD争议与非专业公众关注的问题不一致。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
'I'm Happy if I Can Help'. Public views on future medicines and gene-based therapy in Iceland.

Objective: To explore lay perceptions about medicine and drug therapy (including gene-based therapy) in the present and in the future.

Background: Following almost a year of national debate, the Icelandic parliament passed the Health Sector Database (HSD) Act in 1998. No single issue has been as much debated in Iceland as this database. Despite the explosion of popular and scientific literature in the field of bioethics, there is still a paucity of research concerning 'lay' contributions to the debates.

Methods: The study was designed as a qualitative study. Focus groups (FGs) were conducted followed by one-on-one interviews with the FG moderator. PARTICIPANTS were asked to comment on a future scenario consisting of predictions concerning the consequence of the Human Genome Project over the next 40 years.

Participants: Forty-two persons participated in eight FGs in Iceland. The Icelandic moderator was interviewed in English after each group.

Conclusions: The lay public was relatively optimistic with regard to the future of drugs and gene-based therapy. Reasons for this optimism can be found in a basic trust and belief in the welfare state and the health system. These results are not consistent with studies carried out in other countries where the public appears to be focused on the negative effects of genetic research and the threats to privacy. Most participants expressed concern about potential problems with regard to social and equity issues, whereas the HSD controversy, a discourse based on the rhetoric of bioethics, was at variance with the issues focused on by the lay public.

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