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

Research Ethics

AnnFreeman Cook¹ 

关键词: biobanking;    clinical trials;    genetics;    genomics;    human subject protection;    research ethics;   

DOI  :  10.1177/1363460713494647

学科分类：医学（综合）

来源: Sage Journals

【 摘 要 】

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...

【 授权许可】

CC BY