Community engagement with genetics: public perceptions and expectations about genetics research
Community engagement with genetics: public perceptions and expectations about genetics research
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DOI：
10.1111/hex.12122
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发表时间：
2015-10-01
影响因子：
3.2
通讯作者：
Pullman, Daryl
中科院分区：
文献类型：
--
作者：
Etchegary, Holly;Green, Jane;Pullman, Daryl
分子生物学和基因组学的背景知识继续迅速扩展，有望为改善健康提供无数机会。然而，基因组医学成功的一个关键因素是公众的理解和接受。设计采用社区咨询和在线调查的方式，我们调查了公众对基因组研究的态度和期望。结果加拿大纽芬兰的33名普通公众参与了社区会议，1024名大西洋加拿大人完成了在线调查。总体而言，许多与会者指出，他们缺乏遗传学和相关研究的知识，并借此机会在整个会议期间提出了许多问题。参与者基本上对基因组研究改善健康的能力抱有希望，不仅是为了现在的居民，也是为了子孙后代。然而，他们并不是不加批判地接受这样的研究，在社区咨询过程中出现了各种复杂的问题和问题，并反映在调查答复中。讨论随着生物库的激增和基因组研究的快速发现，公众的支持将是实现健康改善的关键。如果研究人员能够让公众参与定期、透明的对话，这种双向交流可以让人们更好地了解研究过程和设计高效和有效的遗传健康服务，让将使用这些服务的公众了解情况。
Background Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance.Design Using community consultations and an online survey, we explored public attitudes and expectations about genomics research.Results Thirty-three members of the general public in Newfoundland, Canada, took part in the community sessions, while 1024 Atlantic Canadians completed the online survey. Overall, many participants noted they lacked knowledge about genetics and associated research and took the opportunity to ask numerous questions throughout sessions. Participants were largely hopeful about genomics research in its capacity to improve health, not only for current residents, but also for future generations. However, they did not accept such research uncritically, and a variety of complex issues and questions arose during the community consultations and were reflected in survey responses.Discussion With the proliferation of biobanks and the rapid pace of discoveries in genomics research, public support will be crucial to realize health improvements. If researchers can engage the public in regular, transparent dialogue, this two-way communication could allow greater understanding of the research process and the design of efficient and effective genetic health services, informed by the public that will use them.