NDLI: What do Patients Prefer: Informed Consent Models for Genetic Carrier Testing

Content Provider	Springer Nature Link
Author	Ormond, K. E. Iris, M. Banuvar, S. Migue, J. Annas, G. J. Elias, S.
Copyright Year	2007
Abstract	The recent increased number of conditions for which patients can undergo genetic carrier testing raises the question of how best to obtain pre-test informed consent. Clinical approaches vary from a minimalist model to a model where patients are given detailed information about all conditions to be screened for. Few data exist as to patient preferences, or how information impacts decision-making. Eight high-literacy focus groups were conducted to assess the knowledge and preferences of pregnant patients and their male partners. Most groups indicated that some balance between details and brevity was optimal, recognizing that anxiety can occur when patients are provided with too much information and that the wide range of tests offered during pregnancy often led to confusion. Critical areas for the informed consent process included (1) details about the conditions and risk of being a carrier, (2) logistics of testing, (3) next steps if the test is positive, and (4) prognosis, options and resources if the child were to be affected with a disorder. It will be useful to develop model consent programs and prospectively assess their impact on informed consent and patient satisfaction, both when positive and negative results are received.
Starting Page	539
Ending Page	550
Page Count	12
File Format	PDF
ISSN	10597700
Journal	Journal of Genetic Counseling
Volume Number	16
Issue Number	4
e-ISSN	15733599
Language	English
Publisher	Springer US
Publisher Date	2007-05-11
Publisher Place	Boston
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Informed consent Patient decision-making Genetic carrier test Patient expectations Generic consent Ethics Gynecology Clinical Psychology Public Health/Gesundheitswesen Human Genetics
Content Type	Text
Resource Type	Article
Subject	Genetics (clinical)

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