CoSAGE is a research study that examines the hereditary (genetic), lifestyle, and environmental factors that impact a person’s health. We do study participant’s DNA in our research, but not for clinical diagnostic or testing purposes and genetic information is not returned to the study participants. In fact, the CoSAGE laboratory at Michigan State University is not certified to conduct clinical genetic testing.
The samples of blood or saliva that are collected from volunteers during their participation in CoSAGE are stored in a biorepository. A ‘biorepository´ is the collection and storage of a human biologic samples (like blood, saliva or tissue) along with health information. Biologic samples (labeled only with ID numbers) are kept in large, secure freezers to keep the samples usable over time. These biologic samples are stored indefinitely in the CoSAGE laboratory at Michigan State University unless the participant withdraws or the CoSAGE project ends. Health information (labeled only with ID numbers) is also stored in secure databases. The biologic samples are most useful when connected to information about the participant’s health.
As Liz Horn, PhD, MBI and director of the Genetic Alliance BioBank stated in response to a question regarding GINA protection and life insurance,
“. ……participating in a research study/biobank is not the same as genetic testing. Genetic tests have to be conducted in a CLIA-certified lab, so they are different things.”(personal email 3/7/2012)
Even though the CoSAGE Project does not conduct clinical genetic testing, sometimes participants have questions about the risk for discrimination based on one's genetic information.
A new Federal law, called the Genetic Information Nondiscrimination Act (GINA) , generally makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. This law generally will protect you in the following ways:
Health insurance companies and group health plans may not request your genetic information that we get from this research.
- Health insurance companies and group health plans may not use your genetic information when making decisions regarding your eligibility or premiums.
- Employers with 15 or more employees may not use your genetic information that we get from this research when making a decision to hire, promote, or fire you or when setting the terms of your employment.