How Does the HIPAA Law Protect Against Genetic Information Discrimination?

The HIPAA law protects against genetic information discrimination by prohibiting health insurance companies and employers from using genetic information for underwriting purposes, ensuring that individuals’ genetic data is kept confidential and preventing discrimination based on genetic information in the context of healthcare, health insurance coverage, and employment decisions.

Laws That Protect Genetic Information

The HIPAA Privacy Rule offers protection against genetic information discrimination by establishing national standards for safeguarding individually identifiable health information, known as protected health information (PHI). Under this rule, genetic information is considered PHI, and covered entities, such as healthcare providers, health plans, and healthcare clearinghouses, are required to maintain its confidentiality and security. This means that healthcare professionals must take appropriate measures to protect patients’ genetic data from unauthorized access, use, or disclosure, mitigating the risk of discrimination based on this sensitive information. There is also the Genetic Information Nondiscrimination Act (GINA), which complements HIPAA’s protections. GINA specifically addresses the use of genetic information in the context of health insurance and employment. Regarding health insurance, GINA prohibits health insurers from using genetic information to deny coverage, adjust premiums, or impose other discriminatory practices. It ensures that individuals are not penalized or denied coverage based on their genetic predispositions or family medical history, creating a more equitable and inclusive healthcare system.

GINA safeguards individuals against genetic information discrimination in the workplace. Employers are prohibited from using genetic information for hiring, firing, promotion, or other employment decisions. This provision encourages a fair and unbiased working environment, promoting individuals’ willingness to undergo genetic testing and participate in research without fear of negative repercussions. To further emphasize the importance of these protections, the Department of Health and Human Services (HHS) issued a final rule in 2013 that clarified and strengthened HIPAA’s safeguards for genetic information. This rule clarified that genetic information is PHI and must be treated as such by covered entities. It also prohibited health plans from using genetic information for underwriting purposes, ensuring that individuals’ genetic profiles are not utilized to determine eligibility or coverage options.

The combination of HIPAA, GINA, and the HHS’s final rule forms a framework that defends against genetic information discrimination at various levels within the healthcare system. By prohibiting health insurers and employers from using genetic data to make adverse decisions, individuals are incentivized to pursue genetic testing and share their genetic information with healthcare providers without the fear of stigmatization or discrimination. As genetic testing becomes more prevalent in clinical practice, healthcare professionals should engage in open and transparent communication with their patients regarding the implications of genetic testing, the confidentiality of genetic data, and the potential risks and benefits of sharing this information. This way, patients can make informed decisions about their genetic information, leading to a more collaborative and trusting relationship between healthcare providers and patients.

Staying up-to-date with the latest developments and interpretations of HIPAA and GINA is important to healthcare professionals. Compliance with GINA and HIPAA laws ensures ethical practices and creates patient trust and confidentiality. Healthcare providers must take proactive steps to educate their staff about these regulations, implement appropriate privacy measures, and regularly assess their systems’ security to maintain compliance and safeguard against genetic information discrimination.

The HIPAA law, complemented by the Genetic Information Nondiscrimination Act and the HHS’s final rule, safeguards patients against genetic information discrimination in healthcare and employment settings. Healthcare professionals must understand and adhere to these regulations, ensuring the confidentiality and security of patients’ genetic data while creating a fair and inclusive healthcare system that promotes trust, openness, and equal access to care for all individuals.

About Christine Garcia 1299 Articles
Christine Garcia is the staff writer on Calculated HIPAA. Christine has several years experience in writing about healthcare sector issues with a focus on the compliance and cybersecurity issues. Christine has developed in-depth knowledge of HIPAA regulations. You can contact Christine at [email protected]. You can follow Christine on Twitter at