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Genetic Information Nondiscrimination Act (GINA)

Why Employers Care

State and federal laws already exist to protect the genetic information of employees and to prohibit workplace discrimination by employers based on health status. However, Congress passed and former President George W. Bush signed into law The Genetic Information Nondiscrimination Act of 2008 (GINA) that bans the use or collection of any genetic information by insurers and employers in making health benefit and employment decisions. This new law may have an adverse effect on successful employer programs such as disease management, care coordination and wellness initiatives if the law defines genetic information vaguely or too broadly. Prior to the issuance of regulations, The National Business Group on Health (Business Group) submitted comments to and met with the Departments of Treasury, Labor, and Health and Human Services (HHS) to assure that beneficial uses of genetic information and family medical history are not prohibited as the Department creates regulations to implement the Genetic Information Nondiscrimination Act. The Business Group also submitted comments to and met with the Equal Employment Opportunity Commission (EEOC) emphasizing that the requirements under the Health Insurance Portability and Accountability Act are more than sufficient for determining whether employer-sponsored wellness programs are voluntary.

In October of 2009, The Department of Labor's issued regulations under Title I of GINA that conflict with the HIPAA nondiscrimination rules allowing rewards under voluntary wellness programs that include health assessments. HIPAA currently allows employers to give incentives or rewards to participants for the completion of health assessments. However, the regulations for GINA prohibit employers from offering incentives or rewards when health assessment request genetic information or family medical history. The regulations for GINA also prohibit employers from requesting family medical history or other genetic information even when no incentives or rewards are given, if the assessment is used to determine eligibility for disease management programs or is required before eligibility for health coverage.

In November of 2010, The Equal Employment Opportunity Commission (EEOC) under Title II of GINA issued final rules for employers. The rules allow employers to offer incentives for completion of health assessments with family medical history questions as long as employers do not base incentives on responding to these questions and clearly state that employees need not complete medical history or genetic information questions to receive the incentives. In addition, employers may use genetic information, namely family medical history, to identify high risk candidates for disease management and other health interventions as long as they use other factors to identify candidates for the health programs as well.

In February of 2013, HHS released final regulations under HIPAA and GINA. For more information on those regulations please visit our resources page.

The two regulations conflict and pose problems for employers that the government has not yet resolved. The Business Group commented multiple times to federal agencies and leaders of Congress that the law could have unintended consequences for disease management programs, wellness efforts and may undermine pharmacogenomics (a new science that enables physicians to use genetic information to prescribe medications more effectively). We will continue to seek clarification.

What Can Employers Do?

Members of the National Business Group on Health can voice their concerns to the Business Group's public policy team and by responding to public policy opportunities to comment on proposed regulations, contact Congress and/or the Administration, testify, or participate in related activities.

Relevant Tools and Resources Include:

Page last updated: January 29, 2014

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