Sending Office: Honorable Bobby L. Rush
Whether it is to learn more about their ancestry or their predisposition to disease, every day, U.S. citizens send their genetic information to testing services. But
many U.S. citizens are unaware of what happens to their genetic information after they send it in. Services that conduct genetic tests on consumers receive a wealth of genetic information that includes both intimate and personally identifiable information.
These services are then able to sell their consumers’ data to third parties without their consent.
With the popularization of services that offer genetic testing directly to consumers, questions about the consumer’s right to privacy over their genetic information have been raised. Personal genetic information is valuable for
a variety of reasons, including being used for pharmaceutical research. As the technology develops, it is possible that this information can be used for less ethical purposes, like targeting advertisements to consumers based on their genetics. Whenever personally
identifiable information is being sold without the consent, there exists the possibility of that information being misused. Unfortunately, no federal law currently exists to protect consumers from having their personal genetic information sold to third parties
It is for this reason that I am proud to introduce
H.R. 2155, the Genetic Information Privacy Act of 2019. This bill mandates that genetic testing services explain to consumers their right to privacy over their genetic information and receive express consent before giving their information
to a third party. Furthermore, this bill prohibits genetic testing services from making access to their testing contingent on receiving consent to give consumers’ information to third parties.
We must protect consumers’ right to control how their genetic information is used. Together, we can make sure that our genetic information is private information.
I invite you to join me in cosponsoring the Genetic Information Privacy Act of 2019. To learn more or to cosponsor, please contact Nishith Pandya in my office at
Bobby L. Rush
Member of Congress
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