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Highlights the need for privacy and discrimination protections alongside informed decision-making as biomarkers emerge to detect the earliest stages of disease
ATLANTA — Advances in research have identified biomarker tests that make it possible to detect signs of neurodegenerative conditions such as Alzheimer’s disease years before symptoms appear, creating new opportunities for earlier intervention—and new questions for clinicians, patients and families.
In a new paper published in Neurology®, the medical journal of the American Academy of Neurology, Associate Professor Jalayne Arias in the Georgia State University School of Public Health and her co-authors explore how emerging biomarker tests could affect individuals at the earliest disease stages—raising concerns about privacy, stigma and the potential for discrimination. The article emphasizes that as testing becomes more common, policymakers, clinicians and researchers must work together to ensure patients are protected from discrimination in areas such as employment, housing and insurance.
“Biomarker testing has the potential to transform research and treatment for neurodegenerative diseases, but it also raises important questions for patients and their families,” Arias said. “Our paper makes the case for thoughtful, evidence-based policies that protect people from privacy risks and discrimination while still allowing them to benefit from medical advances.”
Unlike diagnostic tools that identify disease after symptoms emerge, biomarkers can reveal early biological changes associated with an increased risk of Alzheimer’s disease, Parkinson’s disease and other neurodegenerative conditions. As these tests become more widely available, more individuals will face difficult decisions about whether they want to learn their biomarker status and how that information could affect their lives.
The article examines concerns regarding the use of biomarker information by third parties such as employers and insurers, and many questions remain unanswered. That uncertainty and the potential for discrimination have the potential to discourage people from pursuing testing or participating in research studies, the researchers noted.
“People may worry about who has access to their information and how it could be used,” Arias said. “Those concerns can prevent individuals from seeking testing and treatment and slow advances in the field by reducing participation in clinical trials.”
Arias encourages patients and families to approach biomarker testing thoughtfully. Before pursuing testing, individuals should discuss potential implications with health care providers and understand the benefits and limitations of available tests. The results could also inform advanced care and financial planning. (A 2024 study Arias led examined the financial burden of dementia care on patients and families).
Clinicians and researchers have a critical role to play, Arias said, by helping patients understand what biomarker results can—and cannot—tell them and ensuring that discussions about privacy are part of the decision-making process.
The paper examines policy considerations and the current legal context and limitations of laws such as the American with Disabilities Act and the Genetic Information Nondiscrimination Act. Its central message is that protections for patients should be guided by evidence and shaped by the real-world concerns of the people most affected.
“We know that new policy solutions will be needed as biomarker testing becomes more common,” Arias said. “Those solutions should be driven by evidence and informed by the experiences and concerns of patients and their families.”
Research reported in this news release was supported by the Alzheimer’s Association. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Alzheimer’s Association.
In addition to Arias, co-authors of the paper are:
- Drew Blasco, Assistant Professor, University of Neveda, Las Vegas School of Public Health
- Emily Largent, Emanuel and Robert Hart Associate Professor of Medical Ethics, University of Pennsylvania
- Anya Prince, David H. Vernon Professor in Law, University of Iowa