The House Bill That Could Sideline Medical Research And Digital Health

Earlier this week, House Republicans released the American Health Care Act, their first complete bill to repeal and replace the Affordable Care Act, which caused a firestorm on the Hill and backlash from policymakers on both sides of the aisle. While Republicans have been making noise and scrambling to push this bill through committee as fast as possible and sidestep Congressional Budget Office review, another bill lurking in the shadows could unravel patient protections and has been gradually making its way through House committees.

This bill, the Preserving Employee Wellness Programs Act, removes limitations on the collection of health information about employees and their family members by employer wellness programs, put into place by the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act (GINA).

The Americans with Disabilities Act, GINA, and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) laws currently provide protection for patient health data from being used to increase cost sharing or deny insurance coverage. Removing limitations on the information that employer wellness programs can collect, however, may lead employers with workplace wellness programs to force employees to receive and disclose the results of genetic testing, or see their employer-sponsored insurance premiums spike.

Furthermore, employees may also be much less likely to share health information and data in the fear that it may be used by employers to increase their premiums or, if the data showed a potential risk of the employee incurring significant medical costs in the future, lose their job altogether. This would be a significant reversal from current trends in health data sharing. Rock Health’s most recent consumer survey report found that 89 percent of patients are willing to share information about past health history and 84 percent are willing to share genetic data.

Researchers and digital health companies rely heavily on this data to improve clinical diagnostics, develop new insights into genomics, increase the scope of preventive care, and design new treatments for otherwise difficult-to-manage diseases. The increasing prevalence of fitness trackers, smartphone sensors, and the Internet of Things has paved the way for researchers at both startups and institutions to map our activity, location, habits, and interactions with our environment to clinical disease, that is, develop digital phenotypes for illness. By working backwards and identifying patterns, this may allow us to detect and prevent early stages or progression of a disease much faster and more precisely than ever before.

However, as these technologies–particularly genomics and biometric sensors–become more sophisticated and capable of predicting the progression of an individual’s health, the number of people either with, or at risk for, “pre-existing conditions” will jump from 27 percent of Americans to nearly all of us. Variability in genetics, socioeconomics, employment, location, and activity level puts everyone at risk, in some aspect or another, of developing one or more medical conditions.

If health status is no longer protected from premium increases and possible discrimination from employers, patient health information sharing will become increasingly scarce. Patients will want to be sure that their health data can’t be used against them when insurers determine prices and coverage status, and the uncertainty alone may provide enough inertia for them to turn away requests from startups and scientists.

While this bill is currently not part of the budget reconciliation process that Republicans are using to push the AHCA through Congress without the need for Democratic support, and would thus require 60 votes to pass the Senate, there’s a risk that House leadership will group this bill as an addendum to the AHCA in the following weeks to push it through.

In an era where we may soon be able to use tools like CRISPR to directly edit human genomes and cell signaling pathways as a mode of treatment, the ability for scientists and engineers to obtain and study patient data in the context of disease initiation and progression is foundational to the advancement of evidence-based medicine. It begs the question then, how can policymakers not only put the current health of every one in four Americans at risk, but also gamble with the future of all of ours?