Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience
Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience
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DOI：
10.1111/1468-0009.12262
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发表时间：
2017-06-01
影响因子：
6.6
通讯作者：
Roberts, J. Scott
中科院分区：
文献类型：
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作者：
Gollust, Sarah E.;Gray, Stacy W.;Roberts, J. Scott
背景虽然政策制定者十多年来一直在考虑直接面向消费者的个人基因组测试（DTC-PGT）的适当性，但关于消费者对这些产品监管的看法的实证数据却很少。没有研究评估消费者的个人测试经历是否与他们对 DTC 测试的获取和监管的看法有关。方法数据分析来自 PGen 研究，这是 23andMe (n = 564) 和 Pathway Genomics (n = 377；总 N = 941) 的 DTC-PGT 客户的纵向前瞻性队列。消费者在收到基因检测结果之前以及收到结果后 6 个月再次收到电子调查。调查结果在 6 个月的随访中，超过 80% 的参与者认为人们有权直接获取遗传信息，父母应该能够为孩子进行 DTC-PGT 检测，并且遗传信息应该保密。参与者支持医疗保险覆盖 PGT（60%）、更广泛地提供 PGT（68%）以及将遗传信息纳入医疗记录（63%）。参与者不太支持政府监管（28%）和将测试限制在临床环境（14%）。保守的政治意识形态与对政府监管的支持较少有关（P < 0.001），对自己的遗传知识更有信心（P < 0.05）也是如此。从公司收到的实际测试结果表明，参与者计算出的常见疾病遗传风险水平与态度无关。然而，那些认为自己收到较高风险结果的人对扩大 PGT 的可用性和将其纳入医疗保健的支持率较低（P < 0.01）。那些报告对基因测试结果感到不安的人不太可能在没有医疗专业人员的情况下认可使用 DTC 产品 (P < 0.01)。结论 PGT 消费者支持扩大对这些服务的使用范围并反对额外的监管。在 PGT 测试方面有过负面个人经历的用户不太支持在没有医疗专业人员的情况下扩大可用性。
ContextWhile policymakers have been considering the appropriateness of direct-to-consumer personal genomic testing (DTC-PGT) for more than a decade, there is little empirical data on consumers' views regarding the regulation of these products. No research has assessed whether consumers' personal experience with testing is related to their views about access to and regulation of DTC tests.MethodsData were analyzed from the PGen Study, a longitudinal prospective cohort of DTC-PGT customers of 23andMe (n = 564) and Pathway Genomics (n = 377; total N = 941). Consumers were sent an electronic survey before receiving genetic test results and again 6 months after receipt of results.FindingsAt the 6-month follow-up, more than 80% of participants believed that people have a right to access genetic information directly, that parents should be able to get DTC-PGT testing for their children, and that genetic information should be kept private. Participants supported health insurance coverage of PGT (60%), wider availability of PGT (68%), and inclusion of genetic information in medical records (63%). Participants were less supportive of government regulation (28%) and restricting testing to clinical settings (14%). Conservative political ideology was associated with less support for government regulation (P < 0.001), as was feeling more confident in one's genetic knowledge (P < 0.05). Participants' level of computed genetic risk for common diseases, as indicated by their actual test results received from companies, showed no relationship with attitudes. However, those who perceived that they had received elevated risk results expressed lower support for expanded availability and incorporation of PGT into health care (P < 0.01). Those who reported being upset by their genetic test results were less likely to endorse access to DTC products without a medical professional (P < 0.01).ConclusionsPGT consumers supported expanded access to these services and opposed additional regulation. Users who had a negative personal experience with PGT testing were less supportive of expanded availability without a medical professional.