澳大利亚和法国受肉瘤影响家庭的比较：对遗传学和偶发发现的看法。
A comparison of Australian and French families affected by sarcoma: perceptions of genetics and incidental findings.
作者信息
Rasmussen Victoria, Forrest Laura E, Rogasik Muriel, Girodet Magali, Meeus Pierre, Sunyach Marie-Pierre, Blay Jean-Yves, Bally Olivia, Brahmi Mehdi, Ballinger Mandy L, Niedermayr Eveline, Thomas David M, Halliday Jane, James Paul, Ray-Coquard Isabelle, Young Mary-Anne
机构信息
Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, Australia.
Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Australia.
出版信息
Per Med. 2018 Jan;15(1):13-24. doi: 10.2217/pme-2017-0035.
AIM
To compare Australian and French perceptions of genetics and preferences regarding the return of incidental findings.
METHODS
Participants from the International Sarcoma Kindred Study received a survey at intake to cancer referral units. A total of 1442 Australian and 479 French individuals affected by sarcoma and their unaffected family members responded to four hypothetical scenarios depicting hereditary conditions of varying treatability and severity.
RESULTS
Australians' preference for the return of incidental findings was consistently higher than French for all scenarios. Country group differences were significant for two scenarios when individual characteristics were controlled through multivariable analyses.
CONCLUSION
Findings support the need for guidelines that are sensitive to sociocultural context and promote autonomous decision-making.
目的
比较澳大利亚人和法国人对遗传学的看法以及对附带发现反馈的偏好。
方法
国际肉瘤家族研究的参与者在进入癌症转诊单位时接受了一项调查。共有1442名澳大利亚人和479名法国人受肉瘤影响，他们未受影响的家庭成员对四个假设情景做出了回应，这些情景描绘了不同可治疗性和严重程度的遗传状况。
结果
在所有情景中，澳大利亚人对附带发现反馈的偏好始终高于法国人。通过多变量分析控制个体特征后，在两个情景中，国家组间差异显著。
结论
研究结果支持制定对社会文化背景敏感并促进自主决策的指南的必要性。
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