Kaphingst K A, Janoff J M, Harris L N, Emmons K M
Center for Community-Based Research, Dana-Farber Cancer Institute, Boston, MA, USA.
Clin Genet. 2006 May;69(5):393-8. doi: 10.1111/j.1399-0004.2006.00614.x.
Although social and ethical issues related to the storage and use of biologic specimens for genetic research have been discussed extensively in the medical literature, few empiric data exist describing patients' views. This qualitative study explored the views of 26 female breast cancer patients who had consented to donate blood or tissue samples for breast cancer research. Participants generally did not expect personal benefits from research and had few unprompted concerns. Few participants had concerns about use of samples for studies not planned at the time of consent. Some participants did express concerns about insurance or employment discrimination, while others believed that current privacy protections might actually slow breast cancer research. Participants were generally more interested in receiving individual genetic test results from research studies than aggregate results. Most participants did not want individual results of uncertain clinical significance, although others believed that they should be able to receive such information. These data examined the range of participants' views regarding the storage and use of biologic samples. Further research with different and diverse patient populations is critical to establishing an appropriate balance between protecting the rights of human subjects in genetic research and allowing research to progress.
尽管医学文献中已广泛讨论了与用于基因研究的生物样本存储和使用相关的社会及伦理问题，但描述患者观点的实证数据却很少。这项定性研究探讨了26名同意为乳腺癌研究捐献血液或组织样本的女性乳腺癌患者的观点。参与者通常不期望从研究中获得个人利益，且主动提出的担忧很少。很少有参与者担心样本会被用于同意时未计划的研究。一些参与者确实表达了对保险或就业歧视的担忧，而另一些人则认为当前的隐私保护措施实际上可能会阻碍乳腺癌研究。与汇总结果相比，参与者通常对从研究中获得个人基因检测结果更感兴趣。大多数参与者不想要临床意义不确定的个人结果，尽管其他人认为他们应该能够获得此类信息。这些数据考察了参与者对生物样本存储和使用的观点范围。对不同患者群体进行进一步研究对于在保护基因研究中人类受试者权利与推动研究进展之间建立适当平衡至关重要。
