Legal Protections to Mitigate Discrimination due to Neurodegenerative Biomarker Status.

Abstract

It is a critical time to advance solutions that would mitigate the perceived, potential, and actual risk of discrimination based on neurodegenerative biomarker information. Across neurodegenerative conditions, biomarkers are being evaluated to detect disease pathology before the onset of clinically measurable symptoms. Clinical adoption and research that expands the use of biomarkers raises novel legal questions and exposes potential gaps in existing privacy and antidiscrimination laws. These concerns may be particularly salient for individuals in the earliest disease stages who may still be employed, have yet to complete financial or medico-legal planning (e.g., life insurance), or are considering housing changes. In this article, we evaluate the current landscape of legal protections and propose a strategy for developing a policy agenda that is informed by empirical evidence. We propose an iterative approach that begins with a comprehensive evaluation of the existing landscape of legal protection alongside the development of evidence that identifies priorities and informs policy strategies. Our recommendations aim to build from existing legal mechanisms, identify gaps in legal protections, and prioritize future policy goals that stem from perceived and actual privacy and discrimination risks. We argue that it is essential to understand the goals of new legislative efforts, to comprehensively assess what evidence is needed to prioritize specific domains of discrimination, and to consider unintended consequences of legislative approaches. Absent this, we risk enshrining lackluster protections into law that fail to support access to biomarker testing advancements that align with patient and participants' interests.