Davis Dena S
J Med Ethics. 2014 Aug;40(8):543-9. doi: 10.1136/medethics-2012-101022. Epub 2013 Jul 10.
There is a flood of papers being published on new ways to diagnose Alzheimer disease (AD) before it is symptomatic, involving a combination of invasive tests (eg, spinal tap), and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase 'there is nothing one can do' is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease (REVEAL) studies and others that conclude that it is 'safe' to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option.
有大量关于在阿尔茨海默病(AD)出现症状之前进行诊断的新方法的论文发表,这些方法涉及侵入性检测(如腰椎穿刺)以及纸笔测试的组合。这改变了AD风险基因检测的局面,使理性自杀成为一个更可行的选择。在这些症状前检测出现之前,即使是有高风险患上AD的人也无法知道疾病是否以及何时会来临。过早自杀可能会失去数年美好的生活,或者有可能一直等到为时已晚,痴呆症已经削弱了制定和实施计划的能力。现在人们可以综合自己所了解的风险情况,通过这些临床检测持续监测,并在痴呆之前制定一个很好的自杀计划策略。这对这些基因检测和临床检测的营销与应用方式以及谈论它们时所使用的语言都有影响。“无能为力”这句话既侮辱人又不尊重计划自杀这一选择,阿尔茨海默病风险评估与教育(REVEAL)研究及其他研究得出的结论称告知受试者其AD风险状况是“安全的”,其所用语言也是如此。此外,一些研究人员提出症状前检测应保留在研究方案内,在有治疗方法可用之前不向受试者公布结果,这是不尊重那些将自杀视为一种选择的高风险人群的自主权。