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What 23andMe's business troubles could mean for user data and security

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this holiday season some Shoppers may be wary of giving the popular gift of ancestry and genetic testing last month the popular ancestry and genetic testing company 23 and me laid off 40% of its Workforce the company says the layoffs are part of its restructuring efforts in a result of a data breach Fallout last year 23 me has agreed to a $30 million settlement over that data breach that affected 6.9 million users but some customers are questioning whether their genetic information is safe let's bring in genetic counsel Goldberg for more on this Dina thank you for
joining us you know 23 M consider this direct to Consumer genetic testing company a transactions with the companies are considered commercial it's not MediCal it's not protected by Hippa so how does this affect the privacy of those customers genetic information and what information was released during this breach what are you worried about going forward sure so um I can't speak to exactly what was released or this breach but I can say that as someone who works um a lot with genetic data that it is something that anytime you are giving your data your biological specimen
to any commercial company or really any company at all it is something to consider what they're doing with that information and typically when we're talking about genetic information um it usually is stored very securely and usually there's consent forms to s and to fill out that will explain what they're doing with your data um so that is something that I like to tell people to make sure you read through and can ask questions about before you're submitting that data now do you think 23 and me this data breach will make people more cautious in how
they release their genetic information yeah I do I think that it can that any type anytime there's a data breach it can make people a little bit more weary about um giving their genetic information but I do think it's really important that we think about the benefits to doing genetic testing and I truly believe that they highly outweigh the risks of there being a potential data breach I think there's so much information that we can get um genetics really is the future of Health Care and there's so many ways that it can be life-changing so
really it's a balance of of really understanding those benefits over the risks of of a data breed Now ABC News got a statement from 23 and me after that breach saying and I'm going to quote here we have strong customer privacy protection in place 23 and me does not share customer data with third parties without customers consent and our research program is opt in requiring customers to go through a separate informed consent process before joining so what do you make of that particularly with where the company is now yeah so I don't know if it
for anyone that's done it recently there are a lot of forms that uh you you will need to fill out and when we talk about consent forms that's um you giving permission for them to use your data and so any type of company that is going to be using genetic information or or in the healthc care space at all should be collecting consent because that's again you allowing them to use your data um and and it again it's really important to understand what they're using it for and I think that all of these companies it's
their responsibility to be as transparent as possible um and really explain what they're going to be doing it and going forward any company that's going to be handling genetic information um really has that responsibility to the public and to their consumers so why is genetic testing so important and how do you think this kind of information can help you make important Health decisions sure so as someone as a genetic counselor who works in genetic testing um and I can tell you that it can be used through all areas of medicine so typically people always think
about genetic testing as something you do when you're planning a family or maybe um someone who's gone through cancer but it's it can be really used in all areas and that can be um somebody who has an undiagnosed disease that maybe needs some answers and um it can be helping people who are healthy understand what they can do to and what what they're at risk for and what to do to lower that risk to so to really personalize it um there are so many parts of our healthare and so many um potential uses for the
future that um yeah I mean it it's the future of of medicine and of personalizing our health care all right genetic counselor Dena Goldberg thank you thank you
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