title: Assessment of a decision aid to assist genetic testing research participants in the informed consent process.
abstract: Limited attention has been given to applying decision-making theories from psychology to the content and process of informed consent in genetic testing research. Data are presented from a study that developed and assessed a psychological theory-based decision aid as part of the informed consent process. This innovative approach assisted at-risk women in assessing the consequences of participating in a research project that offered them free hemophilia A genetic carrier testing. Results suggest: (1) the decision aid can be incorporated into the consent process with few problems; (2) women of varying educational backgrounds can complete the decision aid; (3) while women consider many consequences of genetic testing, their primary focus is on the implications for their family; and (4) this is in marked contrast to the typical benefit-harm statements prepared by researchers for genetic testing.
authors.affiliation: Department of Health Behavior, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7440, USA. james_sorenson@unc.edu
authors.forename: J R
authors.initials: JR
authors.lastname: Sorenson
authors.forename: C
authors.initials: C
authors.lastname: Lakon
authors.forename: T
authors.initials: T
authors.lastname: Spinney
authors.forename: T
authors.initials: T
authors.lastname: Jennings-Grant
mesh_terms: D032962:Consent Forms / Q000592:standards; D003661:Decision Support Techniques; D030881:Disclosure; D005260:Female; D006580:Genetic Carrier Screening; D005820:Genetic Testing; D006801:Humans; D007258:Informed Consent; D016743:Mental Competency