This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Proposed Regulatory Changes Will Undermine Patient Protections Under GINA

September 5, 2015

Employees will be faced with a difficult choice—either disclose personal health information or maintain their privacy and pay more for health coverage.

by Lisa Schlager

Screen Shot 2015-09-05 at 7.43.35 AMPersonal privacy and workplace protections are in jeopardy with recent proposals by the Equal Employment Opportunity Commission (EEOC). In April, the Commission proposed revising and reinterpreting the Americans with Disabilities Act (ADA) to allow employers to impose financial penalties against employees who choose not to answer health-related questions as part of a Health Risk Assessment (HRA), or to undergo medical exams that are not job-related. Under such a policy, the medical questions and tests imposed by an employer’s wellness program will be considered voluntary—even if workers are subjected to thousands of dollars of penalties for not participating. In order for this to be allowable under the Genetic Information Nondiscrimination Act (GINA), the EEOC is proposing changes to the law’s employment provisions that will weaken its protections. A draft of the changes proposed by the EEOC is expected any day now.

What does this mean for me?

To put this in context, the Patient Protection and Affordable Care Act (ACA) set the maximum limit for health-related wellness program penalties at 30% of the cost of one’s health insurance premium.[i] In 2014, the average employee paid about $6000 per year for individual health insurance. Thus, the average penalty could amount to $1,800 per year. If spouses are included in the new GINA rules, that number could double.

Why are these changes being proposed?

A number of provisions in the ACA emphasize healthy lifestyles and disease prevention. In addition to requiring many private insurers to cover certain preventive services such as mammography at no cost to the patient, ACA encourages employers to implement employee wellness programs. According to, these programs are “intended to improve and promote health and fitness.”

Encouraging health and wellness seems like a good thing. Unfortunately, it’s not that simple. Private health plans are prohibited by law from collecting or using genetic information  such as BRCA or other genetic test results, or family history of disease – when making enrollment decisions or underwriting health benefits and premiums. HOWEVER, wellness programs provide a legal way for employers to gain access to this information that people may want to keep private.

Tell me about these wellness programs…

Increasingly, employers are pushing wellness programs to counter rising healthcare costs, shifting more of the expense to their employees. Wellness is a multibillion dollar industry. Third-party vendors administer the majority of employer-based programs. These companies are not bound by the same laws that protect privacy and individual rights as employers or healthcare providers (i.e. the ability for individuals to access to their records, change or update information, or see a list of how their data is disclosed). Some program privacy policies consist of legal jargon, references to waiving one’s privacy rights, and ways the vendor can reuse the information provided, including research and selling data to commercial entities.

In a healthcare setting, people give medical professionals access to their personal information and bodies because there are established ethical principles to put the patient’s welfare first. Employers and their wellness program vendors are not bound by these ethical obligations. Yet most consumers may be unaware of these distinctions.

There is significant debate about whether wellness programs result in the promised benefits of improved health and reduced healthcare costs.[ii] The breadth and quality of these programs vary widely. Currently, federal rules do not require wellness programs to be based on clinical evidence. There are no minimum criteria for what constitutes a wellness program.

Long-term Consequences

If EEOC weakens protective laws, participation in “voluntary” wellness programs could become not so voluntary.[iii] Employees may feel coerced to take part—especially when financial penalties are involved.

Personal privacy and protection against discrimination should not be in conflict with the promotion of wellness—GINA and ADA safeguard those at risk of their health information being used for discriminatory purposes, and foster trust in the system.  One of the ways they accomplish this is by preventing employers from obtaining your sensitive health information. Employer-sponsored wellness programs provide a legal loophole for employers to collect this information. And now these proposed changes to the ADA and GINA regulations will give employers the tools, i.e. financial penalties, to coerce employees to share this information. Understandably, people may not want their employers to have access to this information but they may no longer be able to afford to keep it private.

The EEOC’s revision of these laws would weaken existing protections, harm those who are most vulnerable, diminish faith in health privacy and confidentiality, damage employer-employee relationships, make it more difficult for workers to protect themselves against discrimination, and discourage individuals from undergoing genetic testing and participating in medical research. FORCE is part of a coalition of advocacy groups urging the White House and Congress to take a close look at the potential consequences of the EEOC’s efforts and put a stop to it before harm is done!





[iii] A 2013 survey conducted by the Employee Benefit Research Institute found that over 40% of employees participated in wellness programs because they felt they were required to do so by their employers.

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  1. Tamara Combs says:

    This proposed revision has serious implications for our community. Thank you for that update !

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