Yale University, School of Public Health & Memorial Sloan-Kettering Cancer Center, Center for Health Policy and Outcomes and Clinical Genetics Service, New York, NY, USA.
Eur J Hum Genet. 2013 Nov;21(11):1197-201. doi: 10.1038/ejhg.2012.300. Epub 2013 Jan 23.
Our objective was to explore citizens' informed and reasoned values and expectations of personalized medicine, a timely yet novel genomics policy issue. A qualitative, public deliberation study was undertaken using a citizens' reference panel on health technologies, established to provide input to the health technology assessment process in Ontario, Canada. The citizens' panel consisted of five women and nine men, aged 18-71 years, with one member selected from each health authority region. There were shared expectations among the citizens' panel members for the potential of personalized medicine technologies to improve care, provided they are deemed clinically valid and effective. These expectations were tempered by concerns about value for money and the possibility that access to treatment may be limited by personalized medicine tests used to stratify patients. Although they questioned the presumed technological imperative presented by personalized medicine technologies, they called for increased efforts to prepare the health-care system to effectively integrate these technologies. This study represents an early but important effort to explore public values toward personalized medicine. This study also provides evidence of the public's ability to form coherent judgments about a new policy issue. Concerned that personalized tests might be used to ration care, they suggested that treatment should be made available if patients wanted it, irrespective of tests that indicate little benefit. This issue raises clinical and policy challenges that may undermine the value of personalized medicine. Further efforts to deliberate with the public are warranted to inform effective, efficient and equitable translation of personalized medicine.
我们的目的是探索公民对个体化医学的知情和理性的价值观和期望，这是一个及时但新颖的基因组学政策问题。本研究采用了公众审议的定性研究方法，使用了一个健康技术公民参考小组，该小组旨在为加拿大安大略省的健康技术评估过程提供投入。公民小组由五名女性和九名男性组成，年龄在 18-71 岁之间，每个卫生当局区域各选一名成员。公民小组成员对个体化医学技术改善医疗的潜力存在共同的期望，但前提是这些技术被认为在临床上是有效和合理的。他们对个性化医疗测试可能会限制治疗的可及性表示担忧，因为这些测试可能会限制治疗的可及性。虽然他们对个体化医学技术所带来的假定技术必要性提出了质疑，但他们呼吁加大努力，使医疗保健系统为有效整合这些技术做好准备。本研究是探索公众对个体化医学的价值观的早期但重要的努力。本研究还为公众对新政策问题形成连贯判断的能力提供了证据。由于担心个体化测试可能被用于控制医疗，他们建议，如果患者需要治疗，无论测试表明获益很小，都应该提供治疗。这个问题提出了一些临床和政策方面的挑战，可能会破坏个体化医学的价值。需要进一步与公众进行审议，以告知个体化医学的有效、高效和公平转化。
