President Obama's Precision Medicine Initiative poses security and privacy issues, but they're not all new challenges, Kirk Nahra, partner at the law firm Wiley Rein LLP, says in an interview at HealthcareInfoSecurity.com.
The security issues aren't any different than what you'd see in any big healthcare setting, he says, though the privacy components are a little different.
"If you have this data about people's genetic information and likelihood of getting diseases and things like that, you'd obviously have a privacy concern in that data was used instead of trying to find a potential cure for you, was used by your insurance company or your employer or somebody else to make judgments about you going forward," he says.
"In this project, the government's trying to be very clear that that's not what they have in mind. They want to set up very clear rules about what's going to happen to this data."
On security, consumers hear all the time about attacks on big computerized databases--and the PMI is going to be based on a big computerized database, he points out.
"All you can do is try to be as good as you can be on security," he says.
He says it's not yet clear whether the data will be in a central repository.
The project, which Obama originally announced in his State of the Union speech in January, aims to study the genomic data on 1 million volunteers to better understand their risk of developing certain diseases and individual responses to various treatments.
Yet the lack of centralized, digital health records that patients can share across providers stands as an impediment to precision treatment efforts, says Kathy Giusti of the Multiple Myeloma Research Foundation.
In their quest to reduce the time for genetic sequencing down to one day, the Knight Cancer Institute at Oregon Health & Science University and Intel have created a prototype collaborative platform for data sharing that uses a distributed system rather than a central repository. Researchers at different institutions can connect over a secure network without moving the data.
To learn more:
- listen to the interview