Abstract
Research on lay decision-making for genetic testing has identified many concerns. These include (a) discussions of testing risks/benefits often reflects a professional more than a lay perspective; b) risks/benefits typically provided to patients constitute only part of a broader list of lay reasons for/against testing; and (c) patient's personal considerations are as important as medical considerations in a patient's testing decision. Drawing on decision-making theories in psychology, we developed an instrument that asked women at-risk to be a carrier of a Hemophilia A mutation to list (a) the personal consequences for themselves and significant others of accepting/declining carrier testing; (b) the reasons for accepting/rejecting testing in terms of their and significant others values and beliefs; and (c) their four most important reasons for/against testing. Women are provided with examples of the above. Innovative aspects of this approach include: (a) women construct their own list of personal reasons for/against testing instead of getting a provider list of risks and benefits; (b) the instrument can be completed at home allowing women time to consider the test; and (c) the instrument can be used for provider-lay discussion of testing in the clinic. Pilot work and trial experience (N=76) suggest: (a) women of varying educational backgrounds can complete the instrument; (b) women identify reasons for/against testing beyond examples provided; (c) many of the most important reasons for/against testing are reasons women generate, not examples provided; (d) the most important reasons cited include personal values/beliefs, not just risks/benefits; and (e) women using the instrument accept testing at the same rate as women who do not. The method is applicable to many genetic tests in various clinical settings.
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Sorenson, J., Lakon, C., Spinney, T. et al. A Practical Theory-Based Method to Improve Lay Decision-Making for Genetic Testing. Genet Med 2, 68 (2000). https://doi.org/10.1097/00125817-200001000-00070
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DOI: https://doi.org/10.1097/00125817-200001000-00070