Navigating the Genetic Information Nondiscrimination Act as a Patient

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Summary of Presentation

There are laws that protect consumers’ health privacy other than HIPAA such as the Genetic Information Nondiscrimination Act (GINA) passed in 2008. The law prohibits discrimination based on genetic information by health insurance plans and employers with over 15 employees. Under GINA, genetic information cannot be considered a pre-existing condition by health insurers. Most group and individual health plans may not use genetic information to set eligibility, premium or contribution amounts. Employers cannot request, require or purchase genetic information about an employee or their family members.

Employer-sponsored wellness programs, typically operated by third parties, are problematic. The ACA encourages these programs and permits incentives of up to 50% of one’s health insurance premium. Consequently, employees who choose not to take part in a wellness program in efforts to keep health information about themselves or their spouses private may pay higher health insurance premiums. Many of these third party vendors are not bound by HIPAA or GINA. They may resell health information, leading to potential reidentification and misuse of health data. Some of these vendors use legal jargon in their consent agreements, duping patients into allowing their data to be sold. Ultimately, workplace discrimination safeguards may be compromised. Therefore, the patient community needs stronger protections and third parties should be required to adhere to the privacy rules.

About The Presenter

Lisa Schlager is Vice President of Community Affairs & Public Policy. She manages strategic partnerships and collaborations for FORCE, and spearheads the organization’s public policy efforts by tracking key issues, such as genetic privacy and access-to-care. She developed the FORCE Research Advocate Training (FRAT) program, aimed at preparing consumers to become engaged in research advocacy on behalf of the hereditary cancer community. Prior to joining FORCE, she worked as Principal at ImageWorks, Inc., Independent Marketing Manager at The Weathersby Group, and Manager of Marketing Communications at LEGI-SLATE, Inc. Schlager holds a B.A. from University of Maryland College Park and also studied graduate-level coursework in Public Affairs at the George Washington University.