By: HUB’s EB Compliance Team

In an effort to help employees, some employers would like to add genetic testing benefits to their health plans.  Others want to offer (or require) genetic tests for employees.  However, before doing so, employers should consider the Genetic Information Nondiscrimination Act (“GINA”).

GINA has two sets of rules: one for employers who are requesting genetic information and one for health plans that obtain genetic information.

Employer Rules

For employers, GINA generally:

  • prohibits using genetic information in making employment decisions;
  • prohibits discriminating against an employee based on their genetic information;
  • restricts requesting, requiring, or purchasing genetic information relating to an employee or a family member of an employee;
  • restricts disclosing genetic information; and
  • requires that any genetic information an employer receives must be maintained as a confidential medical record.

“Requesting” genetic information can even include conducting internet searches, eavesdropping on conversations, or asking targeted questions designed to obtain genetic information. 

Given these restrictions, employers cannot require employees to take a genetic test in most circumstances. However, the final regulations provide the following exceptions:

  • The employer offers health or genetic services, including such services offered as part of a voluntary wellness program whereby: (1) the employee provides prior, knowing, voluntary, and written authorization; and (2) additional conditions relating to individually identifiable information are met.
    • For this, if an employer offers a reward for completing a health risk assessment, it must identify any questions that request genetic information. The employer must also offer the reward for completing the assessment, even if the employee does not answer the genetic information questions.
  • The employer requests or requires family medical history from the employee to get an FMLA certification or similar certification under state family and medical leave laws.
  • The information is contained in documents purchased by the employer that are commercially and publicly available (but not including medical databases or court records).
  • The information is to be used for genetic monitoring of the biological effects of toxic substances in the workplace and certain notice, authorization, disclosure and other requirements are met.In particular, the individual must be notified of the monitoring results.
  • The employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or for human remains identification, and certain other requirements are met.
  • The employer inadvertently requests or requires an employee’s (or family member’s) family medical history. In this case, an employer’s receipt of genetic information in response to a lawful request for medical information will be treated as inadvertent if language is included to specifically direct the individual or health care provider not to provide genetic information.(The regulations provide model language for this purpose.)

Health Plan Rules

While GINA’s employer rules apply to employers, an entirely different set of rules apply to health plans and health insurance carriers.  Under these rules, health plans and health insurance carriers cannot:

  • adjust group premium or contribution amounts on the basis of genetic information;
  • request or require an individual or an individual’s family members to undergo genetic testing; or
  • request, require, or purchase genetic information for underwriting purposes.

These broad requirements are generally designed to prevent health plans and carriers from discriminating against individuals who are at risk for certain diseases, based on their genetic information.  However, the rules are clear that premium rates can be adjusted once a disease occurs; however, they cannot adjust rates just because genetic information says a disease may occur.  No genetic information can be collected before, or in connection with, enrollment in a plan.

A Few Notes

The employer rules are enforced by the Equal Employment Opportunity Commission, while the health plan rules are enforced by the Departments of Treasury, Labor, and Health and Human Services.  This means that the definitions of items like “genetic test” and “genetic information” are slightly different.  Regardless, however, genetic information is not just a genetic test, but also includes questionnaires that may ask about heritable diseases. It also includes information about family members.

Additionally, the health plan rules specifically apply to health plans and health carriers.  Other benefits, such as disability and life insurance, would likely fall under the employer rules, rather than the health plan rules.

Therefore, an employer looking to implement a genetic testing program needs to consider both sets of the above rules.  While the rules differ, there are some questions an employer should answer before implementing a genetic testing program:

  1. Is it mandatory or truly voluntary? If it’s mandatory, GINA will likely present an issue.
  2. How can I prevent this information from being used to discriminate? Under either set of rules, discrimination against the individuals is not allowed.
  3. Is this going to be part of my health plan or not? This will help determine which set of GINA’s rules apply.

Regardless, employers looking to implement a genetic testing program should consult with legal counsel to make sure the program is structured properly.  In addition, the employer should consider other potential legal implications, such as whether a standalone genetic testing program is a group health plan and how ERISA, the Affordable Care Act, and other laws might apply to such a program.

If you have any questions, please contact your HUB Advisor. View more compliance articles in our Compliance Directory.

NOTICE OF DISCLAIMER

The information herein is intended to be educational only and is based on information that is generally available. HUB International makes no representation or warranty as to its accuracy and is not obligated to update the information should it change in the future. The information is not intended to be legal or tax advice. Consult your attorney and/or professional advisor as to your organization’s specific circumstances and legal, tax or other requirements.