Health and Aging Policy Fellow/American Political Science Association Congressional Fellow; Senior Advisor, PCORI, Bethesda, MD, USA.
Department of Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA, USA and War Related Illness and Injury Study Center, VA Palo Alto Health Care System, Palo Alto, CA, USA.
J Alzheimers Dis. 2018;66(2):421-423. doi: 10.3233/JAD-180629.
The availability and increasing popularity of direct-to-consumer genetic testing for the presence of an APOE4 allelle led the Alzheimer's Foundation of America Medical, Scientific and Memory Screening Advisory Board to identify three critical areas for attention: 1) ensure consumer understanding of test results; 2) address and limit potential negative consequences of acquiring this information; and 3) support linking results with positive health behaviors, including potential clinical trial participation. Improving access to appropriate sources of genetic counseling as part of the testing process is critical and requires action from clinicians and the genetic testing industry. Standardizing information and resources across the industry should start now, with the input of consumers and experts in genetic risk and health information disclosure. Direct-to-consumer testing companies and clinicians should assist consumers by facilitating consultation with genetic counselors and facilitating pursuit of accurate information about testing.
直接面向消费者的 APOE4 等位基因检测的可用性和日益普及，促使美国阿尔茨海默病基金会医学、科学和记忆筛查咨询委员会确定了三个需要关注的关键领域：1）确保消费者理解测试结果；2）解决和限制获取此信息的潜在负面影响；3）支持将结果与积极的健康行为联系起来，包括潜在的临床试验参与。作为测试过程的一部分，改善获得适当遗传咨询资源的机会至关重要，需要临床医生和遗传测试行业采取行动。现在应该开始在整个行业内标准化信息和资源，消费者和遗传风险及健康信息披露方面的专家也应参与其中。直接面向消费者的测试公司和临床医生应通过促进与遗传咨询师的咨询，并促进对测试的准确信息的追求，来帮助消费者。
