"That's very significant in particular," says CCHF's Twila Brase, "because [groups like] 23andMe and Ancestry.com [have] created this so-called 'genetic privacy alliance' that is going to around with a piece of legislation that says 'privacy, privacy, privacy' – but actually doesn't do what they say it does. [But] this bill in Montana actually does require consent for the sharing of genetic information with third parties."
The legislation, which was introduced by Montana State Senator Daniel Zolnikov (R), puts individuals – not corporations or the government – in charge of their personal information. He explains why it's important to protect individuals' DNA information.
"Our genetic information is the ultimate foundation of our being and can be utilized to predict our current and future behaviors, health, tendencies, and much more," the lawmaker states. "By setting this precedent, we put individuals in the driver's seat of their own precious personal information instead of leaving it up to the discretion of companies and non-existent federal regulations."
Zolnikov contends the data of Americans has been abused "time and time again."
"By protecting our DNA today, we can prevent future abuse that could range from identifying predictive behavior through genetic analysis and trends, to creating a massive pool of data to use to profile and market to individuals," he adds. "The future is unknown, but today we have drawn a clear line in the sand of ensuring that the individual is involved in the conversation."
Brase encourages other states to follow Montana's lead and move forward with what she describes as "real genetic privacy rights."
"Because granting genetic consent and privacy rights means that you acknowledge that the individual is the owner of their own DNA and genetic code," she tells AFN. "So, you have to get consent from them before you can use it, share it, analyze it – [essentially] do all those sorts of things that researchers or others might want to do with it."
"It is really important that every state take a look at the Montana bill and incorporate it into their own state statutes," she concludes.
