Dna Test Can Upload Genetic Info From Other Companies
How to Protect Your Dna Data Earlier and After Taking an at-Home Test
Mail-in genetic tests offering a wealth of data about your ancestry and insight into medical risks — in exchange for a lot of information. Here'southward where that data goes, and how to delete information technology.
Consumer Deoxyribonucleic acid testing kits like those from 23andMe, Ancestry.com and MyHeritage hope a road map to your genealogy and, in some cases, information almost what diseases you're most susceptible to. They also ask for a lot of trust with your DNA information — trust that, in some means, may not be earned. Hither'southward how to protect and delete your data if yous use whatsoever of these services.
Dwelling house DNA testing kits ordinarily involve taking a cheek swab or saliva sample and mailing it off to the visitor. In that piddling sample is the nearly personal information you can share: your genetic code. Some companies share that data with police force enforcement, and nearly sell your Deoxyribonucleic acid information to 3rd parties, afterward which it can become difficult to track. For some people who piece of work for small companies or serve in the military, it can touch on insurance premiums and even the power to get insurance at all.
While DNA testing has been used in medical and scientific contexts for decades, direct-to-consumer testing kits are nonetheless relatively new and legal policies that govern the private utilise of consumer data are still being developed.
Co-ordinate to Dr. James Hazel, a postdoctoral young man at the Centre for Genetic Privacy and Identity in Community Settings, there are fewer protections for your data with consumer DNA testing kits than there would exist if you were taking a medical test. If a doctor takes a DNA sample, that sample is protected by the Health Insurance Portability and Accountability Act and in that location are limits on how it can be shared.
"In the United States, if you're talking about genetic information that'south generated exterior of the health care setting, at that place'due south a relatively low baseline of protection," Dr. Hazel said. "And that'southward provided generally by the by the Federal Merchandise Committee. So the Federal Trade Commission, although information technology'due south not specific to genetic data, has the power to police unfair and deceptive business organization practices across all industries. Other than that, in that location are actually no laws in the United States that apply specifically."
In other words, if y'all want to brand sure your data is safe, you lot're going to have to do the unthinkable: read the visitor's privacy policy. That policy will tell y'all what information the company collects, how information technology'due south used and what control you take over it. If a company deceptively violates its ain policy, the F.T.C. tin step in. Beyond that, though, yous'll have to read a company's policy carefully before signing up.
Go for the big names
For nigh DNA testing companies, the best manner to protect your data is to not hand it over in the beginning place. In 2017, Dr. Hazel's team studied ninety DNA testing companies and found most of their privacy policies wanting. Some companies only had policies governing utilise of their website, while others failed to point whether they strip abroad personally identifiable information from a sample before sending it off for testing. A few of the larger companies may take acceptable policies, just Dr. Hazel said yous probably shouldn't trust smaller testing companies that you haven't heard of.
"When we looked in 2017, we plant that 40 percentage of companies appear to take no written policy that specifically mentioned genetic data," Dr. Hazel said. "Nosotros saw these smaller companies that you might not have heard of had privacy policies that were a paragraph long, a couple paragraphs long, and actually didn't provide any data whatever."
The more than well-known testing companies are safer bets — perchance considering they're and then well-known. "And so when we have larger companies that are constantly sort of in the public spotlight, I think the upshot has been that these companies are generally more answerable," Dr. Hazel said. "And their privacy policies are mostly much more comprehensive."
Iii of the biggest names in home DNA tests are 23andMe, Beginnings.com and MyHeritage. Yous tin can notice their privacy policies and specific instructions on how to delete information from each of them below. Wirecutter, the product review website endemic past The New York Times Visitor, evaluated 15 Dna testing kits and recommended AncestryDNA or 23andMe.
What to watch for before you sign up
When y'all first set upward a new smartphone, you might be asked to give a company permission to rail your location or share data about how you lot apply your phone. In the same manner, one time yous've picked a DNA examination to attempt, there are a few things to watch out for. DNA testing companies tend to ask a lot of questions that may strike you as slow, but if you want to protect your data, you lot'll want to read them all carefully.
Consumers "want to look at what choices they have, in terms of the activities that they tin opt into, or opt out of," Dr. Hazel said. Some companies similar 23andMe have a separate agreement asking permission to use your DNA information in research studies. This data is stripped of identifying labels similar your name or accost that tie it to you specifically, but that's not ever guaranteed to protect your privacy.
In some cases, Dr. Hazel said, companies utilize what's called "de-identified aggregate data," which is relatively safe. This kind of data might include summaries that don't specifically call out individuals, like what percentage of people have a certain beginnings.
"Just these companies besides utilise what's called de-identified individual-level data, where there is, you know, always a take a chance that a person tin can be re-identified from that information," Dr. Hazel said. This kind of data might describe your unique genetic makeup without using your name. While information technology may be unlikely that this data could be linked back to y'all, researchers have shown it is possible. Law enforcement famously used crime-scene DNA that was shared with a genealogical research site to track down a suspect in the Gold State killer case, even though he never used a Dna exam himself, demonstrating that even anonymized data can be used to identify people.
If you give a company permission to share your data with some other research arrangement, y'all can revoke that permission later. However, it will be difficult or impossible to delete your information from third parties that take already received it. It'southward also hard to guarantee that those 3rd parties won't also share your data with all the same another company or research arrangement downwardly the road. "Once that data has been shared with a tertiary party, information technology's really difficult to control further sharing," Dr. Hazel said. That doesn't hateful yous shouldn't share information with researchers, but you should know the risks going in.
You may also be asked for permission to allow the DNA testing company to store your sample, pregnant that information technology can go back and examination it again if more advanced techniques are developed in the future. Some sites too offer a family finder feature that lets potential relatives contact yous if your Deoxyribonucleic acid matches. All of these tin can be very personal permissions to give. Reputable companies will brand sure to inform you as much as possible, just be sure to read everything you're presented with before you click "Agree."
How to delete your data from the Big Three
Each visitor has its own steps for deleting your data. We'll cover the steps for each of the Large Three companies below, as well as what deleting your information with that company entails.
23andMe
To delete your 23andMe data, caput to your account settings page and find the "Delete Your Data" pick nether "23andMe Data." You can download any or all of your data before you destroy information technology. If yous agreed to have your sample saved, it volition also be physically destroyed.
However, 23andMe uses a laboratory that must follow regulations under the Clinical Laboratory Comeback Amendments, or CLIA. This ways that some data, including your Deoxyribonucleic acid, sexual activity and engagement of nascency will be retained in order to comply with these regulations. The company volition no longer use that information, though. You can read more about the company's deletion procedure here.
Ancestry
To delete data from Ancestry, sign into your business relationship, click the "DNA" tab and choose "Your Deoxyribonucleic acid Results Summary." From there, click "Settings" and choose "Delete Exam Results." You'll have to enter your password again to confirm that you lot desire to delete your information.
This procedure will delete your DNA information, equally well every bit foreclose y'all from appearing in whatever family finder results. You can besides delete your entire Beginnings account. Every bit with 23andMe (and any federally compliant DNA-testing company), your Dna information volition be retained for regulatory compliance purposes, only nix else, according to Ancestry'south privacy policy.
MyHeritage
To delete data from MyHeritage, log into your account, click your name in the upper-right corner, and choose "Account Settings." From at that place, scroll to the bottom of the page and click "Delete Business relationship." You can also choose to delete your Family Tree Architect projects or sites without deleting your unabridged account, just this will not necessarily delete your data. Since MyHeritage labs are CLIA-certified, they will too retain some data almost you.
Deoxyribonucleic acid testing companies take improved their methods for deleting your data over the years. However, since the United States government requires these companies to retain Deoxyribonucleic acid data in guild to comply with quality control guidelines, it'due south never actually possible to delete it forever. Before y'all sign up for a testing kit, e'er make certain you know what you're agreeing to and that you're comfortable signing that permission away.
Source: https://www.nytimes.com/2019/06/12/smarter-living/how-to-protect-your-dna-data.html
0 Response to "Dna Test Can Upload Genetic Info From Other Companies"
Post a Comment