Northwestern Medicine Hospital Privacy Investigation

Photo Credit: Unsplash | Published: February 22, 2024

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What's the Northwestern Medicine Hospital Genetic Privacy Investigation?

The Illinois Genetic Information Protection Act (also known as GIPA) does not allow an employer to ask about your family's health history, since it violates the privacy rights of the individuals in your family who have not given consent to their medical conditions being shared.

Northwestern Medicine, previously known as Northwestern Memorial Healthcare, is a non-profit health system associated with the Northwestern University Feinberg School of Medicine in Chicago, Illinois. It comprises research hospitals, acute care facilities, and academic centers.

What are the Illinois GIPA and GINA Laws? What's the Difference?

• GIPA - Illinois Genetic Information Protection Act
GIPA, or the Genetic Information Protection Act, is an Illinois law that seeks to protect genetic information of Illinoisians. The protection is provided for individuals' privacy and non-discrimination based on their "genetic" information, as defined by HIPAA. Generally, the law does not allow employers to make decisions based on certain HIPAA defined "genetic" factors such as RNA, DNA, proteins, chromosomes, metabolites, mutations, or chromosomal changes. It also prohibits the release of some of this private information to anyone other than the person being genetically tested. This is similar to how personally identifiable information is protected.

• GINA - Illinois Genetic Information Nondiscrimination Act
What is the Genetic Information Nondiscrimination Act? Also known as GINA - the law aims to protect the rights of all United States citizens from employers who might otherwise fire, not hire, or otherwise treaty unfairly on the basis of genetic information or family medical history. According to the national "GINA" law, "genetic" information can be data about a gene test, historical medical information in your family, gene tests of a family member, genetic information about fetus, embryo or reproductive information of an individual.