Last episode we discussed what our genomes are and what information we can learn from them. There’s enormous potential using our genomes to solve medical problems. However, in order to get to that point, we need to collect our genomic data. There’s a lot of opportunity, but with that comes a lot of new challenges. This time we’re talking with Dan Lohrmann, an expect in cyber security. We wanted to know how our DNA data is protected, what potential threats there are if people get ahold of this data, and how we can protect and use it appropriately.
“DNA is particularly unique, especially compared to other sensitive information that we want to protect.”
“It’s literally like an arms race. It’s like the Cold War in cyber security right now. The bad guys develop something…people uncover vulnerabilities or uncover a challenge, then a fix is applied, and then somebody else finds some other way to do it.”
“So, maybe there’s data that someone could get that could be used to deny you access to some job, or some insurance, or some role or some different type of activity you’d like to participate in.”
“Quality of care, as well, is another [area of concern]. What if the data gets misplaced, it gets swapped, somehow the data gets misused in my health care?…Could I get the wrong type of care?”
“There’s a lot of things you can do if you have identity theft around your financial records, where you live, your home, your phone number. Those things we can change- we can’t change your DNA!”
“First of all, do research before you submit your [genetic] data whoever it might be…Read the policies, read how your data will be used. Know it, certainly for when it’s voluntary.”
“Don’t be afraid to ask tough questions, don’t be afraid to challenge the status quo, and you may be the reason that some new policy, procedure, or technology is put in place.”
If you’re interested, you can learn more about HIPAA guidelines.