Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed
Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceed
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DOI：
10.1186/s12910-020-00476-4
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发表时间：
2020-05-11
影响因子：
2.7
通讯作者：
Schicktanz, Silke
中科院分区：
文献类型：
--
作者：
Alpinar-Sencan, Zuemruet;Schicktanz, Silke
生物标志物研究越来越受到关注，主要集中在疾病的临床前阶段。这种兴趣需要在临床环境中特别注意沟通和披露。许多国家通过制定国家战略和改进关于披露诊断的准则，将痴呆症列为卫生政策的高度优先事项；然而，风险沟通往往被忽视。本文旨在确定在痴呆预测背景下披露的挑战，并找出现有的临床指南是否充分解决了披露痴呆诊断和披露无症状期和MCI期痴呆发展风险的问题。我们将研究三个国家（美国、加拿大和德国）关于痴呆和轻度认知障碍（MCI）的预测性测试和诊断披露的临床指南和建议，以显示其潜力和局限性。这将提供一个背景，以解决预测信息的伦理影响，并确定如何进一步进行的方法。我们将从审查指南和建议开始，重点关注关于披露痴呆预测和MCI的挑战已经存在的和缺失的内容。然后，我们将强调通过生物标志物识别疾病临床前阶段的转变所产生的新的伦理问题。我们将讨论制定披露风险状态的指导方针的必要性，这与披露痴呆诊断需要不同的考虑。最后，我们将参考德国利益相关者会议，就如何解决这一差距和挑战提出一些建议，这为利益相关者参与的适用性提供了一个很好的起点。本文强调需要制定基于经验的指南，以解决通过遗传和非遗传生物标志物预测痴呆的风险沟通的伦理和社会策略。根据我们的分析，这些指导方针没有充分解决新的发展问题。国际社会应致力于制定关于咨询、风险沟通和披露结果的具体指导方针。我们认为，关于（风险）披露的指导方针应该通过涉及各种利益相关者来制定，并且应该通过涉及外行对风险沟通的需求和愿望的社会实证研究来提供信息。
Background Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries (USA, Canada and Germany) regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment (MCI) to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. Conclusions This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on (risk) disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons' needs and wishes regarding risk communication.