Attorney General Austin Knudsen (R-Montana) is encouraging Montanans to protect their genetic data and reminding them of their right to delete genetic data from DNA testing companies.
"Montana law requires companies, like 23andMe, to obtain consumers' express consent for the sale, transfer or use of genetic data for research purposes," says the Montana Department of Justice in a press release. "The law also requires companies to allow for the deletion of a consumer's genetic data and destruction of a consumer's biological sample. Montanans may revoke any previously granted consent."
Should other states do the same? Twila Brase, RN and president/co-founder of Citizens' Council for Health Freedom says that depends on what if any options they have for protecting their data.
"People who have donated or given their DNA samples to 23andMe should look at the fine print in the document in the contract that they signed and see if they have any right to do anything to get that information and those specimens back or require that they be destroyed," says Brase.
Citizens' Council for Health Freedom warned about genetic testing companies years ago when they were new. For starters, Brase says some of the concerns involve customers not getting accurate information.
"The second thing was what's going to happen to the DNA, and when we looked into the fine print of the contracts, there was this section about third party access, and so I think people who sent their information in don't actually know what third parties may have been given access to their DNA," says Brase.
Sharing your DNA
This particular company wasn’t looking at Montana only.
"Another thing to know is that 23andMe was part of a coalition or a genetic alliance going from state to state trying to get access to the DNA and being able to share it at will without having to worry about any kind of informed consent constraints."
Citizens' Council for Health Freedom played a role in helping Montana's law passed.
