Employment and Insurance Discrimination Based on Biomarkers for Alzheimer's disease

基于阿尔茨海默病生物标志物的就业和保险歧视

• 批准号: 9767001
• 负责人: Jalayne J Arias
• 金额: $ 13.04万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-01 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9767001
• 关键词: Achievement; Address; Adoption; Adult; Age; Age of Onset; Aging; Alzheimer' s Disease; Alzheimer’s disease biomarker; Amyloid; Biological Markers; Biostatistical Methods; Catalogs; Cerebrospinal Fluid; Clinical; Clinical Research; Cognitive; Consent; Counseling; Data; Data Reporting; Dementia; Diagnostic; Disability Insurance; Disclosure; Discrimination; Disease; Educational Status; Effectiveness; Employment; Ethics; Family; Family member; Feasibility Studies; Focus Groups; Fostering; Future; Goals; Health; Health Services Research; Human Resources; Individual; Insurance; Intervention; Interview; Journals; K-Series Research Career Programs; Laws; Legal; Life; Life Insurance; Literature; Long-Term Care; Measures; Medical; Memory; Mentored Research Scientist Development Award; Neurofibrillary Tangles; Neurologic; Neurosciences; Onset of illness; Participant; Patients; Perception; Pilot Projects; Policies; Policy Analysis; Positron-Emission Tomography; Pre-Post Tests; Privatization; Publications; Reporting; Research; Research Methodology; Research Personnel; Research Training; Risk; Structure; Surveys; Symptoms; Targeted Research; Testing; Time; Training; Training Activity; Translating; Wages; base; career; clinical practice; cohort; disease diagnosis; evidence base; experience; genetic information; health record; implementation science; innovation; insight; nervous system disorder; novel; preference; privacy protection; research study; skill acquisition; skills; social; stem; tau Proteins; willingness

SUMMARY AND ABSTRACT In this Mentored Research Scientist Development Award (K01), the applicant requests research and salary support to provide protected time and dedicated training to develop anti-discrimination strategies tailored to neuropathological biomarkers in Alzheimer’s disease. The long-term career goal is to become a leading researcher that integrates law, ethics, and neuroscience to resolve legal and ethical dilemmas that arise in neurological diseases. The proposed study and training will enable the candidate to execute research studies that generate standards for pre- and post- test counseling for biomarker testing and disclosure; measure the impact of law and policy on research and treatment of neurological diseases; and translate evidence based research to inform policy, social, and clinical practices. While the candidate has notable achievements in her field, to become an independent research she needs training to develop (1) research and biostatistical methods skills; (2) a fluency in neurological diseases; and (3) an implementation science skillset to translate research results into policy, social and practice changes. Criteria for successful achievement of training goals include: completion of training activities; submission of a competitive R01 application; publication targets consistent with project goals in legal, policy, and medical journals; and capabilities to independently conduct qualitative, empirical legal, and health services research. Diagnostic criteria define Alzheimer’s disease that begins with neuropathological biomarkers including positron emission tomography imaging or cerebrospinal fluid analysis to measure amyloid or tau. Biomarkers, detectable up to 20 years prior to symptom onset, are essential to advancing research that targets intervention in advance of clinical symptoms. Yet, biomarkers expose patients and research participants to insurance and employment discrimination risks based on biomarker status. There is a critical need for evidence-based research to inform proactive anti-discrimination protections. The proposed study uses validated research methods drawn from qualitative, empirical legal, and quantitative research to achieve the following specific aims: Aim 1: Assess discrimination risks related to an AD diagnosis through interviews with family members of patients with early age-of-onset AD. Aim 2: Determine and strengthen existing anti-discrimination protections based on identified risks and patient experiences related to AD biomarkers. Aim 3: Study the feasibility and effectiveness of implementing proposed anti-discrimination protections within current policy and clinical constructs.

总结和摘要 在本次导师研究科学家发展奖（K01）中，申请人要求研究和薪资 支持提供受保护的时间和专门培训，以制定针对特定群体的反歧视战略 阿尔茨海默病的神经病理学生物标志物的长期职业目标是成为领先的。 整合法律、伦理学和神经科学来解决出现的法律和伦理困境的研究人员 拟议的学习和培训将使候选人能够进行研究。 制定生物标志物测试和披露的测试前和测试后咨询标准； 法律和政策对神经系统疾病研究和治疗的影响；并转化基于证据的内容； 为政策、社会和临床实践提供信息的研究，而候选人在这方面取得了显着的成就。 领域，要成为一名独立研究人员，她需要培训来发展（1）研究和生物统计 方法技能；(2) 精通神经系统疾病；(3) 一套可翻译的科学实施技能； 研究成果转化为政策、社会和实践变革的成功实现培训目标的标准。 包括：完成培训活动；提交竞争性 R01 出版物目标； 符合法律、政策和医学期刊的项目目标以及独立开展的能力； 定性、实证法律和卫生服务研究。 阿尔茨海默病的诊断标准从神经病理学生物标志物（包括正电子）开始定义 发射断层扫描成像或脑脊液分析来测量淀粉样蛋白或 tau 生物标志物， 在症状出现前 20 年内即可检测到，这对于推进针对干预的研究至关重要 然而，在出现临床症状之前，生物标志物使患者和研究参与者接触到保险和治疗。 基于生物标志物状态的就业歧视风险迫切需要基于证据的证据。 研究为主动反歧视保护提供信息 拟议的研究使用经过验证的研究。 从定性、实证法律和定量研究中得出的方法，以实现以下具体目标 目标： 目标 1：通过与 AD 诊断相关的家庭成员访谈来评估与 AD 诊断相关的歧视风险 目标 2：确定并加强现有的反歧视保护措施。 基于与 AD 生物标志物相关的已识别风险和患者经验。目标 3：研究可行性和 在当前政策和临床范围内实施拟议的反歧视保护措施的有效性 构造。