Disclosing Individual CDKN2A Research Results to Melanoma Survivors: Interest, Impact, and Demands on Researchers
Disclosing Individual CDKN2A Research Results to Melanoma Survivors: Interest, Impact, and Demands on Researchers
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DOI：
10.1158/1055-9965.epi-10-1045
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发表时间：
2011-03-01
影响因子：
3.8
通讯作者：
Gruber, Stephen B.
中科院分区：
文献类型：
--
作者：
Christensen, Kurt D.;Roberts, J. Scott;Gruber, Stephen B.
背景资料：是否返回癌症遗传学研究的个人研究结果是广泛争论的，但很少有人知道参与者如何应对结果披露或其时间和成本负担的investigator.Methods：我们重新接触参与者在一个网站的多中心遗传流行病学研究关于他们的CDKN 2A基因检测结果和黑色素瘤的风险。有兴趣的参与者通过电话披露他们的结果，并遵循了3 months.Results：在39例接近，27成功联系，和19（70%摄取）寻求结果，包括三个突变。在披露之前，参与者认可了接收结果的许多好处（平均值= 7.7/9），包括获得与其子女疾病风险相关的信息。平均心理健康评分与基线相比没有变化，并且没有注意到黑色素瘤预防行为的减少。59%的参与者报告说，披露使参与未来的研究更有可能。披露的准备工作需要40分钟，每次重新接触需要611美元。额外的78分钟和68美元，需要披露results.Conclusion：癌症流行病学研究参与者谁收到他们的个人遗传研究结果显示没有证据的心理伤害或虚假保证披露，并表示强烈的信任结果的准确性。我们的研究者的负担很高，但协议可能会有所不同，他们的要求和披露可能会增加参与者的意愿，在未来的研究enrolment.Impact：提供个人研究结果的癌症遗传学研究参与者提出了潜在的挑战，研究人员，但许多参与者的愿望，并积极回应这一信息。癌症流行病学生物标志物Prev; 20（3）; 522-9。（C）2011年《非洲标准化评论》。
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. Cancer Epidemiol Biomarkers Prev; 20(3); 522-9. (C)2011 AACR.