Health-related direct-to-consumer (DTC) genetic testing has been a controversial practice. Especially problematic is predictive testing for Alzheimer disease (AD), since the disease is incurable, prevention is inconclusive, and testing does not definitively predict an individual's future disease status. In this paper, I examine two contrasting cases of subjects who learn through genetic testing that they have an elevated risk of developing AD later in life. In these cases, the subject's emotional response to the result is related to how well prepared she was for the real-life personal implications of possible test results. Analysis leads to the conclusion that when groups of health-related genetic tests are offered as packages by DTC companies, informed consumer choice is rendered impossible. Moreover, I argue, this marketing approach contravenes US Federal Trade Commission policies for non-deceptive commercial communications. I conclude by suggesting ways to improve the prospects for informed consumer choice in DTC testing.

中文翻译：

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阿尔茨海默病和其他疾病直接面向消费者的基因检测的知情选择：两个案例的教训


与健康相关的直接面向消费者（DTC）的基因检测一直是一个有争议的做法。尤其成问题的是阿尔茨海默病（AD）的预测性测试，因为这种疾病无法治愈，预防也没有定论，并且测试并不能明确预测个体未来的疾病状态。在本文中，我研究了两个对比鲜明的案例，这些受试者通过基因检测得知，他们在以后的生活中患 AD 的风险较高。在这些情况下，受试者对结果的情绪反应与她对可能的测试结果对现实生活的个人影响的准备程度有关。分析得出的结论是，当 DTC 公司以套餐形式提供与健康相关的基因检测组时，消费者就不可能做出明智的选择。此外，我认为这种营销方式违反了美国联邦贸易委员会关于非欺骗性商业通信的政策。最后，我提出了一些方法，以改善消费者在 DTC 测试中知情选择的前景。