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

TitleDisclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers
Publication TypeJournal Article
Year of Publication2011
AuthorsChristensen, K. D., Roberts, J. S., Shalowitz, D. I., Everett, J. N., Kim, S. Y. H., Raskin, L., & Gruber, S. B.
JournalCancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology
Date Published2011 Feb 9
ISSN1538-7755
Abstract

BACKGROUND: Whether to return individual research results from cancer genetics studies is a widely debated topic, 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 epidemiological study regarding their CDKN2A gene test results and implications for melanoma risk. Interested participants were disclosed their results by telephone and followed for three months.RESULTS: Among 39 patients approached, 27 were successfully contacted, and 19 (70% uptake rate) sought results, including three with mutations. Prior to disclosure, participants indicated 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 levels, and no decreases to melanoma prevention behaviors were noted. Fifty-nine percent of participants reported that disclosure made their participation in future research more likely. Forty minutes of investigator time and $611 were required per person recruited, with an additional 78 minutes and $68 per participant needed to disclose results.CONCLUSIONS: 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 investigators were high, but disclosure may increase participants' willingness to enroll in future studiesImpact: Providing individual study results to cancer genetics research participants poses potential challenges for investigators, but many participants desire and respond positively to this information.