Overview: Genetic information discrimination involves treating an individual unfairly based on their genetic information.
The Genetic Information Non-Discrimination Act (GINA) as well as many state and local laws prohibit employee discrimination against an individual based on his or her genetic information.
Genetic information is defined as an individual's genetic tests, the genetic tests of the individual's family members and records of the development of a disease or disorder in the individual's family members.
Further, GINA prevents employers from requesting the genetic information of employees and limits its disclosure as well unless such information is acquired: (1) inadvertently; (2) through an employer’s health and genetic services (i.e., voluntary wellness programs); (3) through certification of FMLA leave; (4) through commercially available and publicly available documents; (4) through genetic monitoring programs legally required to monitor biological effect of toxic substances in the workplace; or (6) through DNA testing for law enforcement purposes.
Further, employers are required to keep genetic information in a separate file and treat it as confidential.
Trends: Because GINA is a relatively new federal law, employers should be aware of guidance by the EEOC as well as the courts to guide their interpretation of the law.In the past few years, the EEOC has increased its focus on genetic discrimination cases. Specifically, the EEOC has identified genetic discrimination as one of its priorities in its Strategic Enforcement Plan. Further, the EEOC has pursued and settled genetic discrimination lawsuits claiming that employers unlawfully requested that employees undergo medical exams and provide information about their genetic history and family medical history as well as wrongfully used genetic history information to make employment decisions.
Employers should also be aware that any employee wellness programs also must comply with GINA. In recent years, the EEOC has not hesitated to penalize employers who implement involuntary or health contingent wellness programs or who penalize employees who do not take part in them. In May 2016, the EEOC released a final rule with respect to wellness programs under GINA. The final rule provides that provides that the value of the maximum incentive attributable to a spouse's participation may not exceed 30 percent of the total cost of self-only coverage, the same incentive allowed for the employee. No incentives are allowed in exchange for the current or past health status information of employees' children or in exchange for specified genetic information (such as family medical history or the results of genetic tests) of an employee, an employee's spouse, and an employee's children. The GINA rule includes statutory notice and consent provisions for health and genetic services provided to employees and family members. Further, employers are banned from requiring employees or family members to agree to sale, exchange, transfer or disclosure of health information to participate in a wellness program or to receive an incentive. To comply with confidentiality requirements, an employer should develop and implement clear policies protecting sensitive medical information, train employees who handle confidential information, encrypt health information and promptly notify employees and family members if a breach occurs. The rule will go into effect in 2017 and apply to all workplace wellness programs including those in which spouses or family members participate without enrolling in a particular health plan.
Employers should recognize that as science and technology continue to develop and scientists advance in the mapping of human genes and DNA, GINA could become even more significant. Employers can reasonably expect continued questions about the use and protection of genetic information and how it should be handled.
Employers should also be aware of state and local laws that protect genetic information. .
Author: Beth P. Zoller, JD, Legal Editor
Updated to reflect GINA final rule on wellness programs, effective January 1, 2017.
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This podcast features a conversation with EEOC Assistant Legal Counsel Chris Kuzcynski about proposed changes to the Genetic Information Nondiscrimination Act (GINA) that would enable employers with wellness programs to offer limited incentives in exchange for an employee's spouse providing information about his or her health status.
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