Several large clinical trials are underway to discover therapies to delay or prevent the onset of dementia caused by Alzheimer’s disease (AD). A common feature of these trials is that they are testing therapies in people who do not yet have changes in memory or thinking—that is, who are cognitively unimpaired—but who have a biologically defined risk of developing dementia caused by AD. When these trials eventually succeed, it is reasonable to expect the widespread adoption of biomarker and genetic testing of cognitively unimpaired individuals into clinical practice, as well as treatment prescribed to individuals at heightened risk. Here, we report results from two qualitative studies that sought to understand with whom, why, and how individuals share their AD biomarker and genetic testing results, respectively. We found that sharing is common within the confines of close relationships. However, when sharing outside such relationships, people have multiple concerns, including stigma and discrimination. These concerns highlight the need for additional legal protections and policy changes in anticipation of the coming transformation of AD clinical care.

中文翻译：

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“那将是可怕的”：与他人分享阿尔茨海默病生物标志物和基因检测结果的伦理、法律和社会挑战

几项大型临床试验正在进行中，以发现延迟或预防由阿尔茨海默病 (AD) 引起的痴呆症发作的疗法。这些试验的一个共同特点是，他们正在对记忆或思维尚未发生变化的人（即认知未受损）测试治疗方法，但这些人在生物学上确定有患上由 AD 引起的痴呆症的风险。当这些试验最终成功时，可以合理预期将认知未受损个体的生物标志物和基因检测广泛应用于临床实践，以及对高风险个体的治疗。在这里，我们报告了两项定性研究的结果，这些研究试图分别与谁、为什么以及如何分享他们的 AD 生物标志物和基因检测结果。我们发现，在亲密关系的范围内，分享很常见。然而，在这种关系之外分享时，人们有多种担忧，包括污名和歧视。这些担忧凸显了对即将到来的 AD 临床护理转型的预期需要额外的法律保护和政策变化。