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癌症患者对生物样本库的看法及同意的首选时机。

Cancer patient perceptions about biobanking and preferred timing of consent.

作者信息

Braun Kathryn L, Tsark Joann U, Powers Amy, Croom Kristen, Kim Robert, Gachupin Francine C, Morris Paul

机构信息

1 Office of Public Health Studies, University of Hawai'i , Honolulu, Hawai'i.

出版信息

Biopreserv Biobank. 2014 Apr;12(2):106-12. doi: 10.1089/bio.2013.0083.

DOI:10.1089/bio.2013.0083
PMID:24749877
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3995435/
Abstract

Little is known about how cancer patients feel about donating their tissue, especially in a multiethnic population. Structured interviews were conducted with 30 patients recently diagnosed with cancer, referred to the study by six cancer surgeons and oncologists and by other patients in the study. The participants reported a variety of cancers, and the sample reflected the racial distribution of Hawai`i, including Caucasians (23%), Native Hawaiians and Pacific Islanders (27%), Asians (37%), Hispanics (7%), Native Americans (3%), and African Americans (3%). The interview questions and analysis were guided by the Framework Approach, with interview questions based on pre-set aims. Findings suggest that most cancer patients would donate cancer tissue to science, especially if informed that doing so could help researchers find causes of and cures for cancer. Patients varied on when in their cancer journey they would be most receptive to being asked for a donation, however two-thirds thought they would be more receptive if approached after surgery. Only three of the 30 patients said they would want to be re-consented each time their tissue is requested for research. They identified their physician as the preferred messenger regarding tissue donation. No obvious differences were seen by race. Findings confirm those of other researchers who have reported broad support for biobank participation if informed consent and confidentiality could be assured. Given that the physician was seen as the key messenger about biobanking, more education is needed around cancer tissue collection for physicians, as well as for cancer patients.

摘要

对于癌症患者对捐赠其组织的感受,人们知之甚少,尤其是在多民族人群中。我们对30名近期被诊断出患有癌症的患者进行了结构化访谈,这些患者是由六位癌症外科医生、肿瘤学家以及研究中的其他患者推荐到该研究的。参与者报告了多种癌症,样本反映了夏威夷的种族分布,包括高加索人(23%)、夏威夷原住民和太平洋岛民(27%)、亚洲人(37%)、西班牙裔(7%)、美洲原住民(3%)和非裔美国人(3%)。访谈问题和分析以框架法为指导,访谈问题基于预先设定的目标。研究结果表明,大多数癌症患者愿意将癌症组织捐赠给科学研究,尤其是在得知这样做有助于研究人员找到癌症的病因和治疗方法时。患者对于在其癌症病程的哪个阶段最容易接受捐赠请求存在差异,然而三分之二的患者认为如果在手术后被询问,他们会更容易接受。在这30名患者中,只有三名表示每次其组织被用于研究时都希望再次获得同意。他们认为自己的医生是关于组织捐赠的首选传达者。未发现种族之间存在明显差异。研究结果证实了其他研究人员的发现,即如果能够确保知情同意和保密,人们普遍支持参与生物样本库。鉴于医生被视为生物样本库的关键传达者,需要对医生以及癌症患者进行更多关于癌症组织采集的教育。

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本文引用的文献

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Cancer patient perceptions on the ethical and legal issues related to biobanking.癌症患者对生物库相关伦理和法律问题的看法。
BMC Med Genomics. 2013 Mar 8;6:8. doi: 10.1186/1755-8794-6-8.
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Biobanking past, present and future: responsibilities and benefits.生物库的过去、现在和未来:责任与利益。
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Public perspectives on informed consent for biobanking.公众对生物样本库知情同意的看法。
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The impact of consenter characteristics and experience on patient interest in clinical research.同意者的特征和经验对患者参与临床研究兴趣的影响。
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