Dec 19, 2024
MEMPHIS, Tenn. — Some call it a gift of discovery, a present to trace your roots that's priceless. In fact, there are lots of discounts being offered for people looking to buy a DNA kit for someone as a holiday gift. However, after the recent fallout from 23andMe, which saw its workforce slashed after a data breach, some are wondering about the safety of their most personal information. On a single floor at the Benjamin L. Hooks Central Library, there are thousands of records about Memphis and its past. "This is a Memphis and Shelby County Room. We have anybody that's doing research on the city or the county. This is the place to be," said Public Service Supervisor Verjeana Hunt as she gave WREG a tour. It's also where people curious about their own family history might find clues about long-lost loved ones. Hunt told us about one woman searching for her biological parents and the family looking for a relative's legal name and obituary. Visitors can dig into a treasure trove of old yearbooks, pictures, newspaper articles and legal records dating back decades to try to piece together their puzzle. In some cases, it's a genealogy journey jump-started by an at-home DNA test. "Just the other day, we had, two ladies that came in and, they were doing some research, and they had just found out that they were sisters," Hunt said. Teresa Hill Mays started with paper records in places like the history department at the main library. "Looking for documents, hearing the history of your family, and I thought, well, you know, how do you get past this? You know," said Mays as we sat in the new genealogy section of the Orange Mound Library. But after only getting so far, Mays turned to a DNA kit from Ancestry in hopes of discovering even more about her family. "I said, you know, I think I'm going to try this DNA because I'm wondering if it really works and people discouraged me," Mays said. "Oh, girl, they can't know anything, you know, don't do that. But I tried it and I've been sold since then, and I'm making everybody in the family, everybody get one." Mays, who serves as the President of the Afro-American Historical and Genealogical Society of Memphis learned about her African heritage, found loved ones and continues to connect others. "I monitor about 30 people's DNA kits," added Mays about just how much genealogy work she does now. While some might be considering giving the gift of genetic tracing with a DNA kit for the holidays, others might think twice due to growing concerns about privacy. (Photo by ERIC BARADAT/AFP via Getty Images) Once one of the biggest players in the business, 23andMe, recently slashed its workforce after first facing a data breach, then a plummeting stock price that possibly meant going private. It's left some customers wondering what happens to all that data collected about them if the company changes hands. NewsChannel 3 spoke with Melissa LeMaster Barker, an archivist for Houston County, Tennessee and a professional genealogist who's been in the business since 1990. WREG asked Barker, "What were your biggest concerns as a genealogist?" Barker replied, "All genealogists are concerned with privacy, what is that company going to do with my DNA results." Barker explained while her work doesn't focus on DNA, she says in general, consumers and professionals should read the fine print. "I think that with anything like that, especially when you are giving a company part of your DNA because that's what you're doing, you're giving them a part of you, you need to be aware of what they're going to do with it," explained Barker, who also handles public relations for the Tennessee Genealogical Society. HIPAA doesn't apply to data held by direct to consumer DNA companies, like with medical information. However, several states, including Tennessee have passed genetic privacy laws. Companies like 23andMe and Ancestry say they won't sell customers' data without consent. "The privacy policies are very critical," explained Dr. Pavankumar Mulgand, an Assistant Professor of Management Information Systems at the University of Memphis. While D-T-C DNA companies say they remove identifiable information, and customers can delete their accounts, Dr. Mulgand says once you give up your genetic data, there's really no getting it back. Mulgand explained, "So, yes, your data is anonymized to some extent, but the nature of the genetic information is such that if other genetic pieces are found, it's very easy to re-identify." As an example, Mulgand said to think of solving cold cases. WREG asked, "What do I do with this information so that I can make an informed decision?" After reading up on the company's privacy policy and history of safety, Dr. Mulgand says the ultimate step for anyone considering buying a DNA kit is to decide whether it's worth the risk. "What are you getting in return for what you're giving up?" Mulgand asked. "A great thing to do would be to look at okay, I might get to know where I'm from, I might find some long lost relatives, but is it worth giving up some of my genetic information for that?" Mays, who's learned so much but is still searching for her great-grandmother's father, says she's not worried. "In reality, I'm not really shaken by it and a number of the people I talk to are not really, you know we don't like it, because you want your stuff to be secure," Mays added. For people who do plan to explore their heritage with a DNA kit, Dr. Mulgand advises setting defaults to private on those websites. Meanwhile, for folks who want to trace their ancestry the old fashioned way, the genealogists and historians we talked to say, start with yourself. Write down your own story. They also say the holidays make a perfect time to document family recipes and stories that can be passed down to the next generation. Full statement from 23andMe: 23andMe’s Co-Founder and CEO Anne Wojcicki has publicly shared she intends to take the company private, and is not open to considering third party takeover proposals. Anne also expressed her strong commitment to customer privacy, and pledged to maintain our current privacy policy, including following the intended completion of the acquisition she is pursuing.  Beyond Anne’s pledge to maintain current privacy policy, we note that for any company that handles consumer information, including the type of data we collect, there are applicable data protections set out in law that would be required to be followed as part of any company’s decision to transfer data as part of a sale or restructuring. Our own commitment to apply the terms of our Privacy Policy to the Personal Information of our customers in the event of a sale or transfer is clear: “This privacy statement will apply to your personal information as transferred to the new entity.” We have strong customer privacy protections in place. 23andMe 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. Further, 23andMe Research is overseen by an outside Institutional Review Board, ensuring we meet the high ethical standards for the research we conduct. Roughly 80% of 23andMe customers consent to participate in our research program, which has generated more than 270 peer reviewed publications uncovering hundreds of new genetic insights into disease. In addition to our own strict privacy and security protocols, 23andMe is subject to state and federal consumer privacy and genetic privacy laws that, while similar to HIPAA, offer a more appropriate framework to protect our data than privacy and security program requirements in HIPAA. Although state privacy law protections apply to residents of certain states, 23andMe took the opportunity to make improvements for all 23andMe customers globally.  We believe we have a transparent model for the data we handle, rather than the HIPAA model employed by the traditional health care industry that allows broad exemptions and often unrestricted use and disclosure of protected health information (PHI) when used for treatment, payment and operations purposes, and where consent, opt-out and opt-in concepts are generally not imposed. You can see a chart comparing State Consumer Privacy Laws and HIPAA on page 2 of this document from the Coalition for Genetic Data Protection. We are committed to protecting customer data and are consistently focused on maintaining the privacy of our customers. That will not change.  ...read more read less
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