A new study substantiates concerns on the impact of privacy rules on genetic testing
Under Bill S-201, otherwise known as the Genetic Non-Discrimination Act, Canadian life and health insurers are prohibited from asking people for their genetic information. Warning that the prohibition will lead to higher premiums, the CLHIA has argued that the use of genetic information should be allowed for genetic underwriting purposes.
But a new study shows how much value patients place on having control over their genetic information. The study, conducted by Massachusetts Institute of Technology (MIT) professor Catherine Tucker and University of Virginia economist Amalia R. Miller, examined how different privacy and consent policies affect people’s willingness to undergo genetic testing at hospitals.
The study looked at three different privacy and consent conditions across different US states. In the first condition, patients are advised of potential privacy risks, which they are then asked to consent to. The second provides patients with greater control on genetic data. Finally, the third condition provides a guarantee that genetic data would not be used by “insurers, employers, or other providers of long-term care and insurance.”
“An approach where you gave various guarantees about how the data would be used…actually had no effect [on people’s willingness],” Tucker said.
But there was a stark contrast between the two other conditions. Compared to a baseline 0.54% incidence of genetic testing in the general population, testing incidence was found to be 69% lower among patients who were merely notified about risks of genetic data. Meanwhile, policies that emphasized patient control increased testing incidence by 83% above the baseline.
The researchers used data from the Centers for Disease Control and Prevention’s (CDC) National Health Interview Surveys. The surveys included questions about genetic testing related to cancer risks, to which over 80,000 patients responded.
Related stories:
Canadian insurers out-of-date on genetic testing, says non-profit group
Privacy concerns a priority for insurers, says new CLHIA CEO
But a new study shows how much value patients place on having control over their genetic information. The study, conducted by Massachusetts Institute of Technology (MIT) professor Catherine Tucker and University of Virginia economist Amalia R. Miller, examined how different privacy and consent policies affect people’s willingness to undergo genetic testing at hospitals.
The study looked at three different privacy and consent conditions across different US states. In the first condition, patients are advised of potential privacy risks, which they are then asked to consent to. The second provides patients with greater control on genetic data. Finally, the third condition provides a guarantee that genetic data would not be used by “insurers, employers, or other providers of long-term care and insurance.”
“An approach where you gave various guarantees about how the data would be used…actually had no effect [on people’s willingness],” Tucker said.
But there was a stark contrast between the two other conditions. Compared to a baseline 0.54% incidence of genetic testing in the general population, testing incidence was found to be 69% lower among patients who were merely notified about risks of genetic data. Meanwhile, policies that emphasized patient control increased testing incidence by 83% above the baseline.
The researchers used data from the Centers for Disease Control and Prevention’s (CDC) National Health Interview Surveys. The surveys included questions about genetic testing related to cancer risks, to which over 80,000 patients responded.
Related stories:
Canadian insurers out-of-date on genetic testing, says non-profit group
Privacy concerns a priority for insurers, says new CLHIA CEO
