促进从生物银行存储库中返回可操作的遗传研究结果:参与者对数字干预措施的采用和利用
Lillian Phung1, Elisabeth Wood1, Brian Egleston2
1The University of Pennsylvania, Abramson Cancer Center and Division of Hematology-Oncology, Philadelphia, PA, USA.
HGG advances
|August 26, 2024
概括
使用数字工具或遗传咨询师,可以返回可操作的遗传研究结果. 然而,为了更广泛的利益,必须解决低吸收率和差距等挑战.
科学领域:
- 遗传学 遗传学 是一个
- 这是生物银行.
- 数字健康数字健康
背景情况:
- 参与者希望获得遗传研究结果.
- 需要有效的结果回报策略.
- 试点研究评估数字与遗传咨询师披露.
研究的目的:
- 评估返回可操作的遗传研究结果的可行性.
- 将数字干预与遗传咨询进行比较.
- 识别结果回报的障碍和促进者.
主要方法:
- 在生物库中进行随机试点研究.
- 两个步骤的过程:数字预披露教育和结果披露.
- 数字披露干预与遗传咨询师的比较.
主要成果:
- 46%的符合条件的参与者获得了结果;4.4%的人积极拒绝.
- 年龄较小,披露前教育和遗传咨询师与收到结果相关.
- 观察到的差异:年龄较大,黑人种族和女性性别与无法达到或被动下降有关.
结论:
- 数字工具对返回遗传研究结果充满希望,可能降低成本.
- 低采用率和返回结果的差异需要进一步调查.
- 临床确认测试的障碍需要注意,以最大限度地提高可操作结果的实用性.
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