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

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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.