Abstract
Background Literature on the ethics of returning research-generated genetic results to research participants has not reported on the practical experience of this activity. The Colon Cancer Family Registry (Colon CFR) has recruited participants from the US, Canada, Australia and New Zealand. Colon CFR-wide molecular testing has identified deleterious germline mutations in a DNA mismatch repair (MMR) gene for members of 424 families (153 MLH1, 206 MSH2, 39 MSH6, 26 PMS2). Carriers of mutations in these genes are at high risk of colorectal, endometrial and other cancers.
Highlights
Literature on the ethics of returning research-generated genetic results to research participants has not reported on the practical experience of this activity
* Correspondence: l.keogh@unimelb.edu.au 1Centre for Women’s Health, Gender and Society, University of Melbourne, Melbourne, Victoria, Australia Full list of author information is available at the end of the article
When a deleterious mismatch repair (MMR) gene mutation is identified in a family member, predictive testing is conducted on all enrolled relatives of the carrier, and a letter offering to disclose this information is sent to all family members
Summary
Disclosing genetic research results: experiences of the Colon Cancer Family Registry Background Literature on the ethics of returning research-generated genetic results to research participants has not reported on the practical experience of this activity. The Colon Cancer Family Registry (Colon CFR) has recruited participants from the US, Canada, Australia and New Zealand.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
