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The truth about the truth: What matters when privacy and anonymity can no longer be promised to those who participate in clinical trial research?:

机译:关于真相的真相:当不再能够向参与临床试验研究的人保证隐私和匿名时,什么才重要?

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The ramifications of including genetic components in the clinical studies conducted in non-academic settings create unique ethical challenges. We used a qualitative research design consisting of semi-structured interviews that took place between October 2010 and September 2012. The sample consisted of 80 participants ? 38 physicians and 42 coordinators ? who worked across a number of different settings, including clinics, private practices, small hospitals, free standing research centers, and blended hospital-institutes in both rural and urban communities in 13 states across the United States. The respondents primarily conducted industry sponsored trials and recruited their own patients as research participants. A majority of the respondents (65%) reported that most of the studies they conducted included an additional genetics component, and so participants were asked to donate specimens for genomics or biobanking. While genomics association studies were perceived as being of benefit, awareness of ethical...
机译:在非学术环境中进行的临床研究中包括遗传成分的后果带来了独特的道德挑战。我们使用了定性研究设计,该研究设计由2010年10月至2012年9月之间进行的半结构化访谈组成。样本包括80名参与者。 38位医生和42位协调员?他在美国13个州的农村和城市社区的许多不同环境中工作,包括诊所,私人诊所,小型医院,独立研究中心以及混合医院机构。受访者主要进行了行业赞助的试验,并招募了自己的患者作为研究参与者。大多数受访者(65%)报告说,他们进行的大多数研究都包含额外的遗传学成分,因此要求参与者捐赠用于基因组学或生物库的标本。尽管人们认为基因组学关联研究是有好处的,但对道德规范的认识...

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