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01.12.2014 | Original Research | Ausgabe 6/2014

Journal of Genetic Counseling 6/2014

Disclosure of Genetic Research Results to Members of a Founder Population

Journal of Genetic Counseling > Ausgabe 6/2014
Rebecca L. Anderson, Kathleen Murray, Jessica X. Chong, Rebecca Ouwenga, Marina Antillon, Peixian Chen, Lorena Diaz de Leon, Kathryn J. Swoboda, Lucille A. Lester, Soma Das, Carole Ober, Darrel J. Waggoner
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Electronic supplementary material

The online version of this article (doi:10.​1007/​s10897-014-9721-8) contains supplementary material, which is available to authorized users.


There is currently extensive discussion and debate in the literature on how, when, and to whom genetic research results should be returned (see Genetics in Medicine, April 2012 issue). Here, we describe our experience in disclosing genetic information on Mendelian disorders discovered during the course of our research in the Hutterites. We first assessed attitudes toward the disclosure of carrier results, which revealed that many individuals wanted carrier information and that many intended to use the information in family planning. Based on this information, we developed a pilot study to test and disclose cystic fibrosis (CF) carrier status. Next, a larger scale project was developed in order to disclose genetic research results for 14 diseases to those interested in receiving the information. We developed brochures, offered a live interactive educational program, conducted a consent process, and disclosed results in letters mailed to the consented individuals. Overall, ~80 % of individuals who participated in the educational program signed consent forms for the release of their results for 14 diseases. We describe our experience with returning individual genetic research results to participants in a population-based research study.

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Online Resource 1 Brochure on Cystic Fibrosis (CF) in the Hutterites. (PDF 279 kb)
Online Resource 2 CF results letter sent to CF carriers who were married. (PDF 69 kb)
Online Resource 3 Brochure distributed at the Town Hall describing 14 genetic diseases in the Hutterites. (PDF 311 kb)
Online Resource 4 Disclosure letter for 14 conditions. (PDF 84 kb)
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