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首页> 外文期刊>American journal of medical genetics, Part A >Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy
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Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy

机译：公众对新生儿筛查脊髓性肌萎缩症的初步研究的态度

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A population-based pilot study of newborns screening for a rare genetic condition, spinal muscular atrophy (SMA), is being conducted with funding from the National Institutes of Health. The first component of the study is to assess the ethical, legal, and social implications of population-based pilot studies with a focus on public engagement and parental decision-making for the proposed opt-out approach in this research. We conducted focus groups with members of the general public to ascertain attitudes about the pilot study and acceptability of an opt-out approach in two states, Colorado and Utah, where the pilot screening is being proposed (N=70). We developed an informational video for the project and showed it to the groups prior to the discussion in order to inform participants about population-based research, newborn screening (NBS), permission/consent models, and SMA. Results indicated support for the conduct of pilot studies that is consistent with the current standard of practice for similar population-based programs. There was support for an opt-out approach for parental decision-making; however there was limited parental knowledge about population-based research, NBS and SMA. In general, our participants considered this pilot study to be low risk and of potential benefit to infants and families. The majority of participants were supportive of an opt-out approach with information delivered through various avenues.
机译：在美国国立卫生研究院的资助下，一项针对新生儿筛查罕见遗传疾病脊髓性肌萎缩症（SMA）的基于人群的试点研究正在进行中。该研究的第一部分是评估以人口为基础的试点研究的伦理，法律和社会影响，重点关注公众参与和父母对本研究提出的选择退出方法的决策。我们与公众成员进行了焦点小组讨论，以确定正在提议进行试点筛查的两个州（科罗拉多州和犹他州）对试点研究的态度和选择退出方法的可接受性（N = 70）。我们为该项目开发了一个参考视频，并在讨论之前向各小组展示了这些视频，以便向参与者介绍基于人群的研究，新生儿筛查（NBS），许可/同意模型以及SMA。结果表明支持开展试点研究，与类似的基于人口的计划的当前实践标准相一致。支持采用父母选择的退出方式;但是，父母对基于人群的研究，NBS和SMA的了解有限。总的来说，我们的参与者认为该试点研究风险低，对婴儿和家庭有潜在的好处。大多数参与者都支持采用退出途径，并通过各种途径提供信息。

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