Sharing Genomic Data Consent
Purpose: To make research more powerful, it is helpful for researchers to work with large amounts of
data. Sharing data is one way to reach that goal. We can combine data from different studies to
analyze together; that way data may be used in new ways to learn more about human health and
disease.
We would like to share your genomic data with other researchers. The shared data would not include
identifiers, like your name, date of birth, or where you live. If you agree, we will deposit your deidentified genomic data into a database at the National Institutes of Health (NIH). The information in
this database is shared only with researchers who submit an application to use the data. That
application must be approved by the NIH Data Access Committee. The information may be shared with
researchers all over the world.
The results of tests using your data will not be returned to you because the researchers won’t know who
you are or how to reach you. The aim of the data sharing is to let researchers look for genetic
connections that:
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may increase the chance of getting a certain disease (such as asthma, cancer, diabetes,
heart disease or mental illness) or a condition (such as high blood pressure or obesity)
may affect the progress of a certain disease or condition
may affect treatments (medicines, etc.) that work for certain diseases in some people, but
not in others.
Risk: The risk of sharing genomic data is that there is a very small chance someone could find out who
you are and reconnect you to your health information. NIH requires researchers to promise not to try to
re-identify individuals. But it is possible that in the future it will become easier to identify you. Some
genetic variants may help predict a person’s risk of future disease illness. If health care providers or
insurance companies or employers learn about that risk, they could try to use it against you. This could
present unknown risks. Current federal law will help protect you from genetic discrimination in health
insurance and employment. That law does not help protect against discrimination by companies that
sell life insurance, disability, or long-term care insurance.
Benefit: There is no direct benefit to you from placing your genetic information in the repository.
Allowing researchers to use your genetic data may lead to a better understanding of how genes affect
health. This may help other people in the future.
22Apr2016