Hoop Jinger G, Roberts Laura Weiss, Hammond Katherine A Green
Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin 53226, USA.
Genet Test Mol Biomarkers. 2009 Jun;13(3):331-7. doi: 10.1089/gtmb.2008.0117.
Storing tissue samples for future genetic testing raises practical and ethical issues regarding informed consent and confidentiality. Employed adults' views on this are uniquely valuable but have been little studied.
This study surveyed 570 employees at a U.S. defense laboratory and an academic medical center regarding their willingness to have tissue stored for future genetic testing, interest in receiving results of future testing and being contacted for consent for future testing, and acceptability of various tissue-storage options.
Respondents were somewhat interested in providing samples and significantly less interested in providing traceable samples than untraceable samples. Workers with concerns about having a genetic illness were more interested in providing tissue for future testing. Most participants expressed strong desire to be asked before future genotyping and to receive those test results. Respondents preferred that tissue samples be stored with their doctor, local medical facility, or local research university rather than with their employer, a government agency, or an insurance company.
Employed adults valued future genetic testing as being important to their well-being and strongly preferred reconsenting for future use of stored tissue. These data provide a baseline to measure potential changes in workers' attitudes since the passage of the U.S. Genetic Information Nondiscrimination Act in 2008.
为未来基因检测储存组织样本引发了有关知情同意和保密的实际及伦理问题。在职成年人对此的看法具有独特价值，但相关研究较少。
本研究对美国一家国防实验室和一家学术医疗中心的570名员工进行了调查，内容包括他们对为未来基因检测储存组织样本的意愿、对接收未来检测结果及被联系以获取未来检测同意的兴趣，以及各种组织储存选项的可接受性。
受访者对提供样本有些兴趣，与不可追溯样本相比，对提供可追溯样本的兴趣明显较低。担心患有基因疾病的员工对为未来检测提供组织更感兴趣。大多数参与者强烈希望在未来基因分型前得到询问并收到检测结果。受访者更倾向于将组织样本储存在他们的医生、当地医疗机构或当地研究型大学，而不是他们的雇主、政府机构或保险公司。
在职成年人认为未来基因检测对他们的健康很重要，并强烈倾向于重新同意未来使用储存的组织。这些数据提供了一个基线，用以衡量自2008年美国《基因信息非歧视法案》通过以来员工态度的潜在变化。
