{"id":4670,"date":"2023-12-07T21:52:16","date_gmt":"2023-12-07T21:52:16","guid":{"rendered":"https:\/\/blog.geneticsupportfoundation.org\/?p=4670"},"modified":"2023-12-07T22:40:53","modified_gmt":"2023-12-07T22:40:53","slug":"think-before-you-gift-at-home-genetic-testing-for-the-holidays","status":"publish","type":"post","link":"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/","title":{"rendered":"At-Home Genetic Testing for the Holidays: Think Before You Gift"},"content":{"rendered":"\n<p>It\u2019s that time of year again; time for the barrage of advertisements and commercials trying to sell at home genetic testing. It\u2019s rare to go an hour without being inundated by companies like 23andMe and Ancestry.com, offering their best deal ever to provide you a crystal ball that can answer all of your lingering questions about yourself. But before you rush off to buy that spit kit as a gift for a loved one (or yourself) we encourage you to take a&nbsp; moment to consider what kind of gift you might be giving, or receiving, with these home genetic test kits.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Direct-to-consumer (DTC) genetic testing, or testing that can be ordered from your home without a medical provider, has blown up as an industry over the last 15+ years. And as the number of DTC tests continue to grow, so do concerns regarding consumer privacy protections and the reliability and trustworthiness of the information they provide.\u00a0\u00a0<\/p>\n\n\n\n<p><strong>Privacy<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>If you\u2019ve done a DTC genetic test, then that means that a company has your genetic information, and there is a very good chance that they <a href=\"https:\/\/www.businessinsider.com\/future-healthcare-dna-genetic-testing-23andme-2018-12\">plan on sharing it<\/a>. Sure, they tell you that they\u2019ll only allow your genetic information to be used for the betterment of science. Often left out of the disclosures is the fact the companies hope for profits does not come from test sales, but from how they will monetize consumer&#8217;s personal data. And unfortunately, the companies they sell your data to don\u2019t always have the <a href=\"https:\/\/thednaexchange.com\/2019\/11\/04\/guest-post-if-gay-means-happy-then-why-am-i-so-sad\/\">most noble of endeavors<\/a>.\u00a0<\/li><li>Even if someone happens to get a hold of your genetic code, the company that did your testing said that it would be de-identified. So there\u2019s no way anyone could know it\u2019s you, right? Think again. Although DNA is \u2018de-identified\u2019 there have been many instances where re-identification is not only possible, but can be done rapidly and inexpensively (see <a href=\"https:\/\/www.darkdaily.com\/researchers-easily-reidentify-deidentified-patient-records-with-95-accuracy-privacy-protection-of-patient-test-records-a-concern-for-clinical-laboratories\/\">here<\/a>, <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC5705215\/\">here<\/a>, and <a href=\"https:\/\/gizmodo.com\/ancestry-sites-could-soon-expose-nearly-anyones-identit-1829685818\">here<\/a>).\u00a0<\/li><li>Even if you change your mind and don\u2019t want your genetic information to be in some company\u2019s database somewhere, <a href=\"https:\/\/futurism.com\/neoscope\/home-dna-genomic-data\">previous efforts have shown<\/a> that it\u2019s nearly impossible to put that cat back in the bag.<\/li><li>Beyond companies selling your data for profit, hacking of these companies has already resulted in <a href=\"https:\/\/www.nytimes.com\/2023\/12\/04\/us\/23andme-hack-data.html?unlocked_article_code=1.EE0.5K8R.7i9Lyr7P9lR7&amp;smid=nytcore-ios-share&amp;referringSource=articleShare\">data breaches for millions of people<\/a>. And this isn;t just DNA sequence data, but also other personal information and family connections. Even more disturbingly, these data breaches may have been used to <a href=\"https:\/\/www.nbcnews.com\/news\/us-news\/23andme-user-data-targeting-ashkenazi-jews-leaked-online-rcna119324\">target individuals with Ashkenazi Jewish ancestry<\/a>. Plainly, any breaches of ethnic or ancestral information is a significant safety risk.<\/li><\/ul>\n\n\n\n<p><strong>Accuracy<\/strong><\/p>\n\n\n\n<p>Unfortunately, we at GSF have seen numerous examples of misleading and inaccurate results through the reports of patients we serve. While genetic testing can provide life saving information in many cases, when the information is erroneous or incomplete, the results can be devastating.&nbsp;&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>DTC genetic tests are designed to only look at select parts of your DNA \u2013 they are not comprehensive and do not examine every letter of your genetic code. This results in an immense amount of your genetics not being taken into consideration. So, at best, you\u2019re only getting part of the picture. These partial results are also <a href=\"https:\/\/www.businessinsider.com\/future-healthcare-dna-genetic-testing-23andme-2018-12\">often misunderstood<\/a> by patients who believe they\u2019ve had more comprehensive testing done.<\/li><li>Just because you test \u2018negative\u2019 for a health condition on a DTC test doesn\u2019t mean that you have a low risk for that disease. For example, 23andMe currently tests for 44 gene variants in the BRCA1 and BRCA2 genes. There are more than 4,000 variants in these genes that increase cancer risk that this test will not detect. If you carry a BRCA variant that increases your chance for cancer, there is a good chance that your 23andMe test\u00a0 will not detect it. This test may therefore provide false reassurance and prevent at-risk individuals from receiving appropriate and potentially life-saving cancer screening. These concepts can be difficult to understand, which is where meeting with a specialist (such as a genetic counselor) can be helpful.<\/li><li>On the flip side, just because you carry a gene variant for a health condition doesn\u2019t necessarily mean that you will develop that disease. For example, there is a specific variant in the APOE gene (APOE4) that has been linked to an increased risk for early-onset Alzheimer\u2019s disease. However, the majority of people who carry one of these variants will NOT go on to develop Alzheimer\u2019s disease. Furthermore, even if someone discovers they may have an increased risk for Alzheimer\u2019s, there is currently no available treatment, which can lead to significant stress or anxiety.<\/li><li>Much of the genetic research that has been done thus far has been done on individuals of European ancestry. So, unless you\u2019re of European descent, there\u2019s a good chance DTC testing won\u2019t be as accurate for you.<\/li><li>Labs that do DTC testing are also not as closely regulated, as evidenced by our own staff member\u2019s <a href=\"https:\/\/thednaexchange.com\/2018\/05\/10\/dtc-direct-to-children\/\">experience<\/a> of sending a DNA swab of her family dog and a sample of tap water\u00a0 to a DTC genetic testing company Orig3n. Not only did the lab not identify that these samples were not human, but a full report was issued. Despite reporting these concerns to regulators, these companies pivoted to Covid-19 testing and did not face serious consequences until it was found that they had reported hundreds of <a href=\"https:\/\/thednaexchange.com\/2020\/09\/10\/orig3n-of-the-specious\/\">false positive Covid tests <\/a>on residents of Long-Term Care facilities.\u00a0\u00a0\u00a0<\/li><li>Because of how complex interpreting genetic test results can be, the <a href=\"https:\/\/www.ama-assn.org\/delivering-care\/precision-medicine\/direct-consumer-genetic-testing\">American Medical Association<\/a> encourages \u2018patients to undergo genetic testing under the guidance of a physician or genetic counselor\u2019.<\/li><\/ul>\n\n\n\n<p>Let\u2019s say you\u2019re not doing DTC testing for health reasons \u2013 then none of this applies to you, right? Check this out:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li><a href=\"https:\/\/www.livescience.com\/63997-dna-ancestry-test-results-explained.html\">One science reporter documented<\/a> how he took nine different commercial DNA tests for ancestry and got six different results, illustrating that each lab uses a different algorithm that influences the interpretation of results.<\/li><\/ul>\n\n\n\n<p><strong>Unexpected findings<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>Many people who do the at-home genetic tests are finding out that one or both of their parents are not who they thought they were (&#8220;not parent expected&#8221;). Some studies have shown that non-paternity rates range from as low as <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC4611233\/\">1%<\/a> up to as high as <a href=\"https:\/\/jech.bmj.com\/content\/59\/9\/749.long\">30%<\/a>. This can understandably cause much stress and anxiety not only for the individual but for their family. With millions of people doing ancestry testing every year, that adds up to quite a lot of people who will fall into this category. In fact, it\u2019s already happening frequently enough to have its own <a href=\"https:\/\/www.theatlantic.com\/science\/archive\/2018\/07\/dna-test-misattributed-paternity\/562928\/\">Facebook group<\/a>.<\/li><li>There have also been instances of individuals who are adopted that track down their biological parents who did not wish to be found. And the cases where someone actually <a href=\"https:\/\/www.parents.com\/parenting\/adoption\/stories\/i-found-out-i-was-adopted-from-a-dna-test\/\">finds out they\u2019re adopted<\/a> from a DTC test.<\/li><\/ul>\n\n\n\n<p>Yes, genetic testing can provide powerful information \u2013 when the right test is used and a specialist, such as a genetic counselor, can help put that information into the context of your personal and family history. But there are limits to what any genetic test can tell you. Our genetics make us up, but we are so much more than our genetics.<\/p>\n\n\n\n<p>Whether or not you decide to buy a DTC test this year, if you have questions about genetic testing or results from a DTC test that you would like to review with a genetics professional, please don\u2019t hesitate to <a href=\"https:\/\/geneticsupportfoundation.org\/connect\">contact us<\/a>.&nbsp;More reading: <a href=\"https:\/\/ghr.nlm.nih.gov\/primer\/dtcgenetictesting\/dtcrisksbenefits\">Genetics Home Reference<\/a> (part of the National Institute of Health and the US National Library of Medicine).<\/p>\n","protected":false},"excerpt":{"rendered":"<p>It&rsquo;s that time of year again; time for the barrage of advertisements and commercials trying to sell at home genetic testing. It&rsquo;s rare to go an hour without being inundated by companies like 23andMe and Ancestry.com, offering their best deal ever to provide you a crystal ball that can answer all of your lingering questions &hellip;<\/p>\n<p class=\"read-more\"> <a class=\"\" href=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\"> <span class=\"screen-reader-text\">At-Home Genetic Testing for the Holidays: Think Before You Gift<\/span> Read More \u00bb<\/a><\/p>\n","protected":false},"author":1,"featured_media":4674,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"default","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-4670","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v19.13 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>At-Home Genetic Testing for the Holidays: Think Before You Gift - Gene Cuisine: satisfying your appetite for genetic news and information<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"At-Home Genetic Testing for the Holidays: Think Before You Gift - Gene Cuisine: satisfying your appetite for genetic news and information\" \/>\n<meta property=\"og:description\" content=\"It&rsquo;s that time of year again; time for the barrage of advertisements and commercials trying to sell at home genetic testing. It&rsquo;s rare to go an hour without being inundated by companies like 23andMe and Ancestry.com, offering their best deal ever to provide you a crystal ball that can answer all of your lingering questions &hellip; At-Home Genetic Testing for the Holidays: Think Before You Gift Read More \u00bb\" \/>\n<meta property=\"og:url\" content=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\" \/>\n<meta property=\"og:site_name\" content=\"Gene Cuisine: satisfying your appetite for genetic news and information\" \/>\n<meta property=\"article:published_time\" content=\"2023-12-07T21:52:16+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-12-07T22:40:53+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/blog.geneticsupportfoundation.org\/wp-content\/uploads\/2023\/12\/Gift-image.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1252\" \/>\n\t<meta property=\"og:image:height\" content=\"626\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"blogAdmin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"blogAdmin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"6 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\"},\"author\":{\"name\":\"blogAdmin\",\"@id\":\"https:\/\/blog.geneticsupportfoundation.org\/#\/schema\/person\/5dad9c8693b7bda310f543a81ea7f651\"},\"headline\":\"At-Home Genetic Testing for the Holidays: Think Before You Gift\",\"datePublished\":\"2023-12-07T21:52:16+00:00\",\"dateModified\":\"2023-12-07T22:40:53+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\"},\"wordCount\":1266,\"publisher\":{\"@id\":\"https:\/\/blog.geneticsupportfoundation.org\/#organization\"},\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\",\"url\":\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2023\/12\/07\/think-before-you-gift-at-home-genetic-testing-for-the-holidays\/\",\"name\":\"At-Home Genetic Testing for the Holidays: Think Before You Gift - 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