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Multicenter Study
. 2011 Mar;20(3):522-9.
doi: 10.1158/1055-9965.EPI-10-1045. Epub 2011 Feb 9.

Disclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers

Kurt D Christensen  1 , J Scott Roberts, David I Shalowitz, Jessica N Everett, Scott Y H Kim, Leon Raskin, Stephen B Gruber
Affiliations
Multicenter Study

Disclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers

Kurt D Christensen et al. Cancer Epidemiol Biomarkers Prev. 2011 Mar.

Abstract

Background: Whether to return individual research results from cancer genetics studies is widely debated, but little is known about how participants respond to results disclosure or about its time and cost burdens on investigators.

Methods: We recontacted participants at one site of a multicenter genetic epidemiologic study regarding their CDKN2A gene test results and implications for melanoma risk. Interested participants were disclosed their results by telephone and followed for 3 months.

Results: Among 39 patients approached, 27 were successfully contacted, and 19 (70% uptake) sought results, including three with mutations. Prior to disclosure, participants endorsed numerous benefits of receiving results (mean=7.7 of 9 posed), including gaining information relevant to their children's disease risk. Mean psychological well-being scores did not change from baseline, and no decreases to melanoma prevention behaviors were noted. Fifty-nine percent of participants reported that disclosure made participation in future research more likely. Preparation for disclosure required 40 minutes and $611 per recontact attempt. An additional 78 minutes and $68 was needed to disclose results.

Conclusion: Cancer epidemiology research participants who received their individual genetic research results showed no evidence of psychological harm or false reassurance from disclosure and expressed strong trust in the accuracy of results. Burdens to our investigators were high, but protocols may differ in their demands and disclosure may increase participants' willingness to enroll in future studies.

Impact: Providing individual study results to cancer genetics research participants poses potential challenges for investigators, but many participants desire and respond positively to this information.

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Conflict of interest statement

Disclosure of Potential Conflicts of Interest

No potential conflicts of interest were disclosed.

Figures

Figure 1
Figure 1
Study flowchart.
Figure 2
Figure 2
MHI-5 scores of individual participants before and after disclosure. Higher scores indicate better mental well-being.
See this image and copyright information in PMC

References

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