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2014 Grants - Arias
Legal, Ethical and Social Analysis of Preclinical Biomarker Tests in Alzheimer’s
Jalayne Arias, J.D.
Cleveland Clinic Foundation
2014 Mentored New Investigator Research Grant to Promote Diversity
Someday clinicians may be able to use “biomarkers” to offer individuals diagnostic tests that could detect Alzheimer’s disease before clinical symptoms are evident. A biomarker can be measured to indicate the presence of disease in a specific person. Examples include certain molecules in the blood or cerebrospinal fluid (the fluid that surrounds nerve cells in the brain and spinal cord) or brain changes detected by sophisticated imaging methods. Results from these tests could benefit individuals and their families by offering them the opportunity to plan for the future, as well as begin early treatment as therapies become available. However, documenting information regarding positive biomarkers in an individual’s medical records may cause unintended consequences for both the individual with Alzheimer’s and their families, such as risks of employment discrimination and challenges to insurance eligibility. It is currently unknown if existing federal and state laws will protect individuals with documented Alzheimer’s biomarkers in their medical records. This issue is distinct from the consequences of disclosing genetic predisposition to Alzheimer’s disease, a risk factor currently protected under the Genetic Information Nondiscrimination Act (GINA).
Jalayne Arias, J.D., and colleagues will evaluate the legal and policy implications for individuals with positive biomarker test results documented in their medical record with a specific focus on employment discrimination and insurance eligibility. The researchers will interview clinicians who are Alzheimer’s experts as well as other professionals who engage in decision-making relevant to employment or insurance eligibility (e.g., human resource managers) to gather their perceptions of the potential consequences of disclosing positive biomarker test results. Finally, the Arias’ team will evaluate the legal findings and the expert interviews to propose model laws and policies that would protect individuals with positive biomarker test results who are vulnerable to unjustified actions by employers or insurers. The results of these studies may help provide a foundation for research that examines the legal, ethical and policy challenges of implementing Alzheimer’s disease biomarker testing.