Largent Emily A, Stites Shana D, Harkins Kristin, Karlawish Jason
Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA 19104, USA.
Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA 19104, USA.
J Law Biosci. 2021 May 19;8(1):lsab004. doi: 10.1093/jlb/lsab004. eCollection 2021 Jan-Jun.
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.
目前正在进行几项大型临床试验，以寻找延缓或预防阿尔茨海默病（AD）所致痴呆症发病的疗法。这些试验的一个共同特点是，它们正在对尚未出现记忆或思维变化的人进行治疗测试，也就是说，这些人认知功能未受损，但具有生物学定义的患AD所致痴呆症的风险。当这些试验最终成功时，可以合理预期，对认知功能未受损个体进行生物标志物和基因检测将广泛应用于临床实践，同时也会对高危个体进行治疗。在此，我们报告两项定性研究的结果，这两项研究分别旨在了解个体与谁、为何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，在亲密关系范围内分享很常见。然而，当在这种关系之外分享时，人们会有多种担忧，包括耻辱感和歧视。这些担忧凸显了在AD临床护理即将发生变革之际，需要额外的法律保护和政策变革。
