Objective: This study explores the legal and ethical challenges surrounding predictive testing for Parkinson’s disease (PD), with a particular focus on its impact in employment, health care, and insurance contexts. We examine how current regulations address the disclosure of individual risk assessments and identify gaps in legal protections that could hinder the adoption of new predictive technologies.

Background: Advancements in predicting the likelihood of developing PD have seen significant progress, especially with the potential availability of non-invasive biomarker-based tests or even digital prediction. These tests could enable early detection of risk or disease stages before symptoms arise, becoming increasingly important as treatment options for early-stage PD emerge to better manage progression or one day even halt development of symptoms. However, predictive testing is not only relevant to those tested but also to third parties such as employers, insurers, and health care providers. The results from these tests could trigger reporting or disclosure requirements, creating substantial barriers for individuals considering predictive diagnosis.

Method: We examine legislation and judicial precedents from various jurisdictions to assess the regulatory landscape around individual risk predictions, focusing on the obligations to disclose or share such information.

Results: While current insurance laws provide some safeguards against discrimination based on genetic information, protections for non-genetic disease predictions are limited and largely unregulated. With the rapid development of non-genetic disease prediction methods, legal protections, rights, and duties remain unclear, increasing uncertainties for individuals seeking and offering predictive testing. This underlines the need for robust regulations to balance competing interests in a fair and equitable way.

Conclusion: This study highlights the challenges in balancing the chances of PD risk prediction with the necessity of protecting individuals from potential discrimination. Ethical and societal values should guide the development of regulations that address these challenges, especially in light of the growing importance of early disease detection and treatment. By doing so, we aim to ensure that the benefits of predictive testing can be realized in a responsible, effective, and reflected manner in order to bring their potential to a true benefit for all affected persons.

« Back to 2026 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/predicting-parkinsons-navigating-risk-rights-and-regulation/