Reeves Ashley, Trepanier Angela
William Beaumont Health Systems, Royal Oak, MI, USA.
Wayne State University Genetic Counseling Graduate Program, 540 E. Canfield Street, Detroit, MI, 48201, USA.
J Genet Couns. 2016 Feb;25(1):166-78. doi: 10.1007/s10897-015-9854-4. Epub 2015 Jul 16.
Multiplex genetic carrier screening is increasingly being integrated into reproductive care. Obtaining informed consent becomes more challenging as the number of screened conditions increases. Implementing a model of generic informed consent may facilitate informed decision-making. Current Wayne State University students and staff were invited to complete a web-based survey by blast email solicitation. Participants were asked to determine which of two generic informed consent scenarios they preferred: a brief versus a detailed consent. They were asked to rank the importance of different informational components in making an informed decision and to provide demographic information. Comparisons between informational preferences, demographic variables and scenario preferences were made. Six hundred ninety three participants completed the survey. When evaluating these generic consents, the majority preferred the more detailed consent (74.5%), and agreed that it provided enough information to make an informed decision (89.5%). Those who thought it would be more important to know the severity of the conditions being screened (p = .002) and range of symptoms (p = .000) were more likely to prefer the more detailed consent. There were no significant associations between scenario preferences and demographic variables. A generic consent was perceived to provide sufficient information for informed decision making regarding multiplex carrier screening with most preferring a more detailed version of the consent. Individual attitudes rather than demographic variables influenced preferences regarding the amount of information that should be included in the generic consent. The findings have implications for how clinicians approach providing tailored informed consent.
多重基因携带者筛查正越来越多地融入生殖保健中。随着筛查疾病数量的增加,获得知情同意变得更具挑战性。实施通用知情同意模式可能有助于做出明智的决策。通过群发电子邮件邀请韦恩州立大学的在校学生和教职员工完成一项基于网络的调查。参与者被要求确定他们更喜欢两种通用知情同意方案中的哪一种:简短同意书还是详细同意书。他们被要求对不同信息成分在做出明智决策中的重要性进行排序,并提供人口统计学信息。对信息偏好、人口统计学变量和方案偏好进行了比较。693名参与者完成了调查。在评估这些通用同意书时,大多数人更喜欢更详细的同意书(74.5%),并认为它提供了足够的信息来做出明智的决策(89.5%)。那些认为了解被筛查疾病的严重程度(p = 0.002)和症状范围(p = 0.000)更重要的人更有可能更喜欢更详细的同意书。方案偏好与人口统计学变量之间没有显著关联。人们认为通用同意书为关于多重携带者筛查的明智决策提供了足够的信息,大多数人更喜欢更详细版本的同意书。个人态度而非人口统计学变量影响了对通用同意书中应包含信息量的偏好。这些发现对临床医生如何提供量身定制的知情同意具有启示意义。