Comparison of Informed Consent Preferences for Multiplex Genetic Carrier Screening among a Diverse Population
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- 作者：Ashley Reeves ; Angela Trepanier
- 关键词：Informed consent ; Multiplex carrier screening ; Genetic screening ; Decision making ; Reproductive care ; Preferences ; Attitudes
- 刊名：Journal of Genetic Counseling
- 出版年：2016
- 出版时间：February 2016
- 年：2016
- 卷：25
- 期：1
- 页码：166-178
- 全文大小：358 KB
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Wayne State University Fact Book. (2012). Who Are WSU’s students? Retrieved August 2012. http://wayne.edu/facts/2012/students/who-are.php . - 作者单位：Ashley Reeves (1)
Angela Trepanier (2)
1. William Beaumont Health Systems, Royal Oak, MI, USA
2. Wayne State University Genetic Counseling Graduate Program, 540 E. Canfield Street, Detroit, MI, 48201, USA - 刊物类别：Biomedical and Life Sciences
- 刊物主题：Biomedicine
Human Genetics
Public Health
Clinical Psychology
Gynecology
Ethics - 出版者：Springer Netherlands
- ISSN：1573-3599
文摘
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. Keywords Informed consent Multiplex carrier screening Genetic screening Decision making Reproductive care Preferences Attitudes