{"id":652,"date":"2018-10-10T12:50:57","date_gmt":"2018-10-10T16:50:57","guid":{"rendered":"http:\/\/joindeleteme.com\/blog\/?p=652"},"modified":"2024-08-21T15:12:54","modified_gmt":"2024-08-21T19:12:54","slug":"dna-testing-kits-does-privacy-matter-to-ancestry-dna-and-23andme","status":"publish","type":"post","link":"https:\/\/joindeleteme.com\/blog\/dna-testing-kits-does-privacy-matter-to-ancestry-dna-and-23andme\/","title":{"rendered":"DNA Testing Kits: Does Privacy Matter to Ancestry DNA and 23andMe?"},"content":{"rendered":"\n

DNA Testing companies like Ancestry DNA, 23andMe, MyHeritage, Helix, and FamilyTreeDNA might be using your private information in ways that you don\u2019t understand, and that puts your privacy at risk. <\/span><\/p>\n\n\n\n

If you haven\u2019t used a DNA testing kit yourself, you probably know somebody who has. Companies like AncestryDNA, 23andMe, and MyHeritage promise to help you uncover the secrets hiding in your saliva. Most who sign up simply want to learn about their regional and ethnic origins, but some DNA testing kits are now uncovering genetic health risks, personal traits, and carrier statuses. These services have even found their way into current events: <\/span>23andMe offered to help reunite families separated at the border<\/a><\/strong>, and the formerly \u2018cold cases\u2019 of the <\/span>Golden State Killer<\/a><\/strong> and the <\/span>murder of April Tinsley<\/a><\/strong> were solved using the services of similar DNA testing companies.<\/span><\/p>\n\n\n\n

\"DNA<\/a><\/figure>\n\n\n\n

The market for these services is thriving. <\/span>In 2017, the industry was worth about $99 million, and is expected to be worth $310 million by 2022.<\/a><\/strong> AncestryDNA, the largest DNA testing company, has performed millions of tests in the last 7 years, amassing hundreds of gallons of saliva. Issues have been raised regarding the accuracy of these tests and, of course, the issue of privacy. Is it safe to hand over your most sensitive personal information to these private companies?<\/span><\/p>\n\n\n\n

Privacy Comparison: Ancestry, 23andMe, My Heritage, Helix, and Family Tree DNA<\/b><\/h2>\n\n\n\n
\"dna<\/figure>\n\n\n\n

Ancestry DNA<\/h2>\n\n\n\n

Privacy Score: 2\/5<\/b><\/h3>\n\n\n\n

Review:<\/b><\/h4>\n\n\n\n

AncestryDNA<\/strong><\/a> is the most popular DNA testing kit based on their stated number of 10 Million+ customers, with DNA testing kits starting at $99. RootsWeb, a site run by Ancestry, experienced a data breach in 2017 where they were forced to turn off the site. A file was acquired containing the log-in information of around 300,000 accounts; of those customers, 55,000 used the same log-in information for their Ancestry account, and 7,000 were active users. Since the breach, Ancestry has taken precautions on their site, adding a detailed <\/span>Privacy Center<\/a><\/strong> breaking down their privacy policy in simpler language. In general, their privacy policy and practices seem to be average compared to other DNA testing companies.<\/span><\/p>\n\n\n\n

Ancestry will keep your saliva sample indefinitely, but they will dispose it if you make a request over the phone with their customer service team. We appreciate that Ancestry provides a Live Chat support option, so it\u2019s easy to get answers to privacy questions.<\/span><\/p>\n\n\n\n

However, the strangely secretive nature of their collaboration with <\/span>Calico labs<\/a><\/strong> could raise concerns for many users. What is most concerning to us is their historical record and people search<\/a> <\/strong>service, which makes it easy to find anyone’s personal information. For these reasons, they receive a privacy score of 2 out of 5<\/strong>.<\/span><\/p>\n\n\n\n

Read more about Ancestry DNA and privacy here.<\/strong><\/a><\/p>\n\n\n\n

23andMe<\/b><\/h2>\n\n\n\n

Privacy Score: 2\/5<\/b><\/h3>\n\n\n\n

Review:<\/b><\/h4>\n\n\n\n

23andMe<\/strong><\/span><\/a> is the second most popular DNA testing kit, claiming <\/span>over 1 million customers<\/a><\/strong>. Their pricing ranges from $99 to $199 depending on which services you choose. Like Ancestry, they have a detailed <\/span>Privacy Center<\/strong>,<\/span><\/a> but they do not offer a chat service. When I emailed in privacy questions, it took them a little over 24 hours to respond, but their response was thorough. 23andMe does give you the option to have your saliva disposed after testing; they will otherwise keep it for up to 10 years. Finally, their focus on the health data market and their partnership with <\/span>GlaxoSmithKline<\/a><\/strong> has raised serious concerns about the monetization of consumer data, so they also receive a privacy score of 2 out of 5.<\/span><\/p>\n\n\n\n

My Heritage<\/b><\/h2>\n\n\n\n

Privacy Score: 2\/5<\/b><\/h3>\n\n\n\n

Review:<\/b><\/h4>\n\n\n\n

MyHeritage<\/a><\/strong> started as a genealogy website and began offering DNA tests in 2016. In June 2018, hackers <\/span>breached 92 million MyHeritage accounts<\/strong><\/span><\/a> but only gained access to encrypted emails and passwords, rather than genetic data. Still, MyHeritage has taken steps to improve its security, such as implementing two-factor authentication. Unlike 23andMe and Ancestry, MyHeritage does not have a simplified privacy guide; their <\/span>privacy policy<\/a><\/strong> is long and difficult to read, like most privacy policies these days. They store your saliva sample until it is no longer usable, and they do not outline a procedure for having it disposed. Based on these findings, privacy does not seem to be a priority for MyHeritage, so they received a privacy score of 2 out of 5.<\/span><\/p>\n\n\n\n

Helix<\/b><\/h2>\n\n\n\n

Privacy Rating: 1\/5<\/b><\/h3>\n\n\n\n

Review:<\/b><\/h4>\n\n\n\n

Helix<\/strong><\/span><\/a> offers an \u2018\u00e0-la-carte\u2019 DNA testing service, so users can choose the exact kind of analyses they\u2019d like done with their  DNA testing kit. For these analyses, Helix has <\/span>many partners<\/a><\/strong> with whom they share your data. As a result, you need to be proactive about checking each partner\u2019s privacy policy before agreeing to share your data with them. On its own, Helix would have an average privacy rating. Their <\/span>Privacy Highlights page<\/a><\/strong> is easy to read, but their policies are complicated by the partnership aspect of the service. Helix\u2019s privacy policy is only part of the picture: if you want to really know what is happening with your data, you must also read the privacy policies of each of their partners. For this reason, we give Helix a 1 out of 5 for their privacy score: while their ‘pick-and-choose’ approach to testing might be compelling for some customers, it also makes it more difficult for people to have a full understanding of what is happening with their personal data.<\/span><\/p>\n\n\n\n

Family Tree DNA<\/b><\/h2>\n\n\n\n

Privacy Rating: 4\/5<\/b><\/h3>\n\n\n\n

Review:<\/b><\/h4>\n\n\n\n

Similar to Helix, <\/span>FamilyTreeDNA<\/a><\/strong> allows users to choose different kinds of tests they would like performed on their DNA. They\u2019re not partnered with any third-party research companies, and unlike many DNA testing services, they have their own in-house lab. With all of your data \u2018under one roof\u2019 it\u2019s only subject to one privacy policy, rather than the privacy policy of each party. FamilyTreeDNA does not have a privacy center with a simplified version of their <\/span>privacy policy<\/a><\/strong>, but the policy itself is not overly difficult to read. They also have a chat feature for quick questions. For these reasons, we give FamilyTreeDNA a rating of 4 out of 5: there are certain things that it does better than other DNA companies, but some of the risks inherent in DNA testing are still there.<\/span><\/p>\n\n\n\n

How are DNA Testing Companies Using Your DNA?<\/b><\/h2>\n\n\n\n

Your DNA is your most sensitive information, even more personal than your social security number or your fingerprint. It\u2019s frightening to think that these private companies are storing that away, and could one day profit from it in ways you never actively agreed to.<\/span><\/p>\n\n\n\n

Many customers don\u2019t think about what happens to their DNA sample after they receive the results of their tests. Both Ancestry and 23andMe use the data they have acquired for research projects. Most AncestryDNA customers consent to have their de-identified DNA results shared with research partners to improve health sciences, such as curing diseases. Similarly, 23andMe says that it will not share your information with third parties unless you opt in, which about <\/span>80%<\/a><\/strong> of users do.<\/span><\/p>\n\n\n\n

\"dnaThe research goals of these companies, however, are not made clear. While customers might believe they are participating in altruistic research, they will not know exactly what kind of research their data is involved in. Ancestry\u2019s main research partner is Calico Life Sciences, a Google subsidiary whose focus is on extending human lifespans. <\/span>Calico does not reveal much about their research<\/strong><\/span><\/a>, and has been criticized and <\/span>called the \u201cvanity project\u201d of a few Silicon Valley billionaires<\/a><\/strong>. 23andMe <\/span>partnered with drug giant GlaxoSmithKline<\/a><\/strong> to develop drugs for treating Parkinson\u2019s disease. President of the Center for Medicine in the Public Interest, Peter Pitts, has <\/span>raised concerns<\/a><\/strong> over people paying to give their DNA to for-profit companies.<\/span><\/p>\n\n\n\n

Your DNA Could be Used Without Your Knowledge- Are You “Giving Away” Your DNA?<\/b><\/h2>\n\n\n\n

New York Senator Chuck Schumer, who has <\/span>called for a Federal Trade Commission investigation of DNA test companies<\/a><\/strong>, criticized the Terms of Service agreements used to get this consent from consumers. <\/span>A press release on his website<\/a><\/strong> argues that the language used, \u201cclearly suggests a desire for firms to monetize the DNA data they receive. At the same time, it is so vague that consumers do not have any concrete understanding of to whom and for what purposes their data might be sold or used.\u201d In the past, <\/span>the FTC has warned consumers of the privacy risks in using a DNA testing service<\/a><\/strong>, and is now investigating DNA testing companies over the way they handle private information and genetic data.<\/span><\/p>\n\n\n\n