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Challenges to informed consent for exome sequencing: A best–worst scaling experiment
- Source :
- J Genet Couns
- Publication Year :
- 2019
- Publisher :
- Wiley, 2019.
-
Abstract
- As exome sequencing expands as a diagnostic tool, patients and providers have voiced concerns about communicating the breadth and scope of potential results when obtaining informed consent. This study aimed to understand how genetic counselors prioritize essential components of the informed consent process and whether counselor factors influence these decisions. Development of a best-worst scaling experiment was informed by a systematic literature review and two focus groups. In all, 11 choice sets were created using a balanced incomplete block design, where participants selected the most and least important object in each set. Mean best-worst (BW) scores were calculated to summarize the relative importance of each object, and mediation analyses assessed whether responses were associated with genetic counselor factors and attitudes. In all, 342 members of the National Society of Genetic Counselors completed the online survey. Ranking of BW scores suggests that participants prioritize collaborative decision-making, assessing understanding and managing expectations, with the least emphasis placed on discussing technological complexities. Stratified analyses found that counselors more experienced with obtaining informed consent for exome sequencing and those reporting higher perceptions of patients' ability to manage information rated discussing variants of uncertain significance as significantly more important (p
- Subjects :
- Male
Mediation (statistics)
Informed Consent
Genetic counseling
Decision Making
Applied psychology
Uncertainty
Intention
Focus Groups
Focus group
Article
humanities
Counselors
Systematic review
Ranking
Informed consent
Exome Sequencing
Humans
Female
Psychology
Set (psychology)
Genetics (clinical)
Exome sequencing
Subjects
Details
- ISSN :
- 15733599 and 10597700
- Volume :
- 28
- Database :
- OpenAIRE
- Journal :
- Journal of Genetic Counseling
- Accession number :
- edsair.doi.dedup.....d47c03530e42fa72898780f641587e43