Research participants' experiences with return of genetic research results and preferences for web-based alternatives
Research participants' experiences with return of genetic research results and preferences for web-based alternatives
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DOI：
10.1002/mgg3.898
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发表时间：
2019-09-01
影响因子：
2
通讯作者：
Bradbury, Angela R.
中科院分区：
文献类型：
--
作者：
Gaieski, Jill B.;Patrick-Miller, Linda;Bradbury, Angela R.
背景虽然人们越来越有兴趣与参与者分享基因研究结果，但如何最好地传达研究结果的风险、益处和局限性仍不清楚。方法 收到基因研究结果的参与者回答了开放式和封闭式问题，涉及他们收到结果的经历以及对基于网络的遗传咨询替代方案的兴趣和优点和缺点。结果 107 名有乳腺癌个人或家族史的 BRCA1/2 阴性女性同意接受基因研究结果，82% 的人完成了有关其经历的调查项目。大多数参与者表示，他们的预披露或披露会议（78% 和 89%）没有任何他们不喜欢（74%）或会改变（85%）的内容。他们最常报告喜欢遗传咨询师并学习新信息。分别只有 24% 和 26% 的受访者不愿意通过基于网络的替代方案完成披露前咨询或结果披露。最常报道的优点包括方便和减少时间。缺点包括无法提问、存在误解的风险以及接触的非个人性。结论 大多数收到遗传研究结果的参与者对电话遗传咨询非常满意，但有些人可能愿意考虑使用自我导向的网络替代方案来进行预先披露的遗传教育和结果返回。
Background While there is increasing interest in sharing genetic research results with participants, how best to communicate the risks, benefits and limitations of research results remains unclear. Methods Participants who received genetic research results answered open and closed-ended questions about their experiences receiving results and interest in and advantages and disadvantages of a web-based alternative to genetic counseling. Results 107 BRCA1/2 negative women with a personal or family history of breast cancer consented to receive genetic research results and 82% completed survey items about their experience. Most participants reported there was nothing they disliked (74%) or would change (85%) about their predisclosure or disclosure session (78% and 89%). They most frequently reported liking the genetic counselor and learning new information. Only 24% and 26% would not be willing to complete predisclosure counseling or disclosure of results by a web-based alternative, respectively. The most frequently reported advantages included convenience and reduced time. Disadvantages included not being able to ask questions, the risk of misunderstanding and the impersonal nature of the encounter. Conclusion Most participants receiving genetic research results report high satisfaction with telephone genetic counseling, but some may be willing to consider self-directed web alternatives for both predisclosure genetic education and return of results.