How Safe is Your Information When You Use a DNA Testing Kit?
by Jessa Barron October 22, 2015 nextadvisor.com
“..They can help us discover more about our origins and even help us connect to family members we didn’t know we had. While there are questions about how these tests are completed, one of the more pertinent questions relates to the security of these tests. Many are concerned with who has access to your DNA test once it’s sent back into the lab and what the lab can legally do with your DNA. To help you determine how safe your information is if you use a DNA testing kit, we answer some of the most common questions when it comes to protecting your information and test results…”
Risks of DNA Testing in Search for Ancestors May 30, 20069:00 AM ET npr.org
“..I should point out that, when you look at the mitochondria and you look at the Y chromosome, it is only looking at one chapter in the 23 chapters of the DNA history. And DNA is, if you want to think about it in a more practical term, it’s like a tape recorder. And it records all of your ancestral migrations, and it has nothing to do with politics, or race, or religion. It is only recording those events, and half of it comes from your mother and half of it comes from your father. But it’s not always equal.
So, that being said, parents and children do not necessarily always inherit, let’s say the minor components of a genetic ancestry. So you might have three children, and one child would inherit, let’s say, a 15 percent sub-Saharan African content, and the second child will inherit none. And that’s just the DNA shuffle, as we call it. ..
But we also know that this DNA and this racial categorization is used in forensics and in criminology, in ways that your own privacy might be subject to a court order, for example. To find out if any relatives in your family might be involved in some activity. “
What DNA Testing Companies’ Terrifying Privacy Policies Actually Mean Kristen V. Brown Senior Writer, Gizmodo. gizmodo.com
‘..Lucky for you, Gizmodo slogged though every line of Ancestry.com, 23andMe, and Helix’s privacy, terms of service, and research policies with the help of experts in privacy, law and consumer protection. It wasn’t fun. We fell asleep at least once. And what we found wasn’t pretty.
“It’s basically like you have no privacy, they’re taking it all,” said Joel Winston, a consumer protection lawyer. “When it comes to DNA tests, don’t assume you have any rights.”..
here’s what you need to know before giving away your genetic information.
Testing companies can claim ownership of your DNA
Okay, so your DNA is inside of you. A corporation can’t really claim ownership of it. But they can claim ownership of the DNA sample you send them, and the analysis they run on it, including the resulting information on the makeup of your genome.
When it comes to Ancestry, while the company recently revised its policy to state that it “does not claim any ownership rights in the DNA that is submitted for testing,” another clause in its policies asserts that even if they don’t actually own your DNA, the company can use that DNA basically however it wants: …
Pitts also pointed out that if a genetic testing company was bought, there’s no telling how a new owner might handle the data….
The other thing that’s clear is that genetic testing companies are definitely selling information to third parties for medical research in order to make money. ..
Not to mention, while the Genetic Information Non-Discrimination Act allegedly prevents health insurers and workplaces from discriminating based on your genetic information, gaps in the law mean that life, long-term care, or disability insurance providers as well as the military can still make decisions based on findings from your DNA. ..
Genetic testing companies may promise to not share information with insurers without your consent, but that doesn’t stop an insurer from asking you whether you have ever taken any genetic tests. And if the answer is yes, you could be compelled to share information relevant to your health. (A new health care bill and seemingly stalled legislation introduced last March in the house both further threaten to challenge protections that allow you to keep your genetic information private.)…
If you do not read those documents—and many don’t—you’re missing the fine print that explains how your DNA can be used, misused, leaked, hacked, sold and commodified without your knowledge or deliberate consent.
Privacy risks lurk in DNA tests, experts warn By Patrick Cain National Online Journalist, News Global News August 15, 2016 8:00 am globalnews.ca
“..But others are curious about the complex, highly personal information about you coded in your DNA: drug companies, insurers, sometimes police.
And once you put your cheek swab in the mail, you risk permanently losing control over a complete copy of your genetic data, linked to your real identity.
Should insurers see the secrets locked in your genes?
Liberal MP Rob Oliphant announces bill to prevent genetic discrimination
Internet of Things our ‘biggest threat to privacy,’ expert warns
“I think you have to assume that you’re going to lose control over that information,” warns Ann Cavoukian, a former Ontario privacy commissioner who runs the Privacy and Big Data Institute at Ryerson University…
Closing a 23andMe account doesn’t necessarily mean the company’s copy of your genetic data will disappear:
“We allow customers to close their accounts. It’s a bit complicated by our regulatory compliance for laboratories in the United States, which requires that raw information be held for a minimum of 10 years. The information will be de-identified, but will continue to be stored for that set amount of time.”…”
…Your genetic data can show your odds of getting diseases, like the BRCA1 genetic mutation that can mean a much higher risk of breast and ovarian cancer. Some diseases, like Huntington’s disease, are genetic, and susceptibility can be read from someone’s genetic information. With the science of genetics in its infancy, it’s impossible to know what can be told about you from your DNA in the future.
“With genetic data, it is very concrete, in terms of a road map to your physical conditions,” Cavoukian says….
“We are very clear that users own and control their data,” ancestry.com spokesperson Patrick Erlich wrote in an e-mail. “They can download it, ask us to delete it and destroy the sample, and can revoke their opt-in consent to participate in research projects at any time.”
“As disclosed in our policies, DNA samples are stored without personally identifying information at either a testing laboratory or other storage facility and may be kept by us unless or until circumstances require us to destroy the sample, or it is no longer suitable for testing purposes. ”
So what should an individual do? Like any other decision about digital privacy, the answer really comes down to your own comfort level, and how you perceive the trade-off between some information now and a potential privacy breach in the future…”
CORRECTION: Ancestry.com Hands Over Client DNA Test Results to Cops Witho̶u̶t̶ a Warrant*-
A pretty good way to discourage people from using gene testing services
Ronald Bailey|May. 6, 2015 1:11 pm reason.com/blog
In the event of corporate bankruptcy, consumers’ genetic data would likely be considered a corporate asset and sold. That is what happened when deCODE, a prior competitor of 23andMe, went bankrupt in 2009. Pharmaceutical giant Amgen purchased the company in December 2012 for $415M, in part for its large data bank.
You may learn about your own health risks or carrier status and by extension the potential risks and carrier status of your relatives…”
Is home genetic testing safe and reliable? – The Feed
Differences Between Companies
23andMe, Ancestry and Selling Your DNA Information 23andMe, Posted on December 30, 2015 dna-explained.com
“..However, opting out of his higher level DOES NOT stop the company from utilizing, sharing or selling your anonymized DNA and data. Anonymized data means your identity and what they consider identifying information has been removed.
Many people think that if you opt-out, your DNA and data is never shared or sold, but according to 23andMe and Ancestry’s own documentation, that’s not true. Opt-out is not truly opt-out. It’s only opting out of them sharing your non-anonymized data – meaning just the higher level of participation only. They still share your anonymized data in aggregated fashion…”
Uprooted: The dangers of DNA testing
Virginia Hughes | October 1, 2013 | MATTER geneticliteracyproject.org
“Searching your genetic ancestry can certainly be fun: You can trace the migration patterns of 10,000-year-old ancestors, or discover whether a distant relative ruled a continent or rode on the Mayflower. But the technology can just as easily unearth more private acts—infidelities, sperm donations, adoptions—of more recent generations, including previously unknown behaviors of your grandparents, parents, and even spouses. Family secrets have never been so vulnerable…”
Problems with AncestryDNA’s Genetic Ethnicity Prediction? Blaine Bettinger19 June 2012 201 Comments thegeneticgenealogist.com
Different Reference Populations and Algorithms
As I suggested above, different companies use different reference populations and algorithms to create a biogeographical estimate, which can result in varying estimates.
For example, in my previous review of AncestryDNA’s Genetic Ethnicity Prediction, I compared my genetic ethnicity results from three companies (Ancestry.com, 23andMe, and FTDNA), and found that their results varied considerably. I’m not surprised by this, but I do expect that over time – as the industry arrives at more standard reference populations and algorithms (which the cheap whole-genome sequencing revolution will enable) – that estimates from different companies will align much more closely. Be patient and enjoy being a pioneer…”
-Results didn’t show?
Ask Ancestry Anne: Where Is My Native American DNA? blogs.ancestry.com
“..So how much of your great-great-grandmother’s DNA are you likely to have? Probably around 1.5625%! And that may not be enough to detect Native American ethnicity.
If you can find older generations on that line to test, I recommend that. Also, get brothers, sisters and cousins tested. You never know who might have enough DNA to be detected.
Even if you find the DNA connection, you will still want to follow the paper trail. I recommend our Native American Research Guide to get you started.
At-Home DNA Tests Might Not Be as Accurate as You Think
Published on Aug 11, 2017
DNA tests are a popular resource for people wanting to understand their ancestry and disease probability. But how accurate are these tests?
We Got Our DNA Tested, Here’s How It Actually Works – https://youtu.be/dbiv6BAmdF4
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Seeking Ancestry in DNA Ties Uncovered by Tests
“Genetic tests, once obscure tools for scientists, have begun to influence everyday lives in many ways. The tests are reshaping people’s sense of themselves – where they came from, why they behave as they do, what disease might be coming their way.”
Revamped DNA Test Kit Back on Shelves
“The company also promised ‘personalized insights based on analysis of 650,000 genetic variations,’ and the ‘only service available direct-to-consumer with reports that meet FDA standards.'”
DNA Test Sheds Light on Mystery Deaths
“A new DNA test can restore at least part of the identity of long-dead people who left no trace of their image, scientists reported on Monday. The technique has revealed the hair and eye colours of unknown individuals slaughtered as sub-humans by the Nazis and of a mystery woman buried alongside monks in a mediaeval crypt, they said.”
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“…As far as genetics goes, all three of the triplets had their result show up as being 99% European. However, it was when that percentage began to be broken down that some real discrepancies began to arise. As the results were revealed on the show, the girls, the audience and even the doctors themselves were more and more shocked at the results. First, it was revealed that Erica had around 16% Irish and British ancestry, however Nicole had 18% Irish and British ancestry. Well, that seems to be fairly minor so far right? It was only going to get crazier as more was revealed! ..l
The rest of the results continued to deviate from what was expected. The 23andMe test showed that while all three girls had French and German heritage, each triplet had a different percentage. Nicole had 11% French and German, Jaclyn had 18% and Erica had 22.3%. Twenty-two to eleven percent seems like a pretty drastic difference for triplets with identical DNA. For their Doctors segment, each time a new percentage was revealed it would flash on the screen and the audience would react in absolute amazement. The girls themselves were also clearly very confused about how their differing results could happen.
The final ethnicity to be revealed was the girls’ Scandinavian heritage. And for this one, yet another shocker was revealed. Two of the girls, Erica and Jaclyn both had the exact same results with the same percentage of Scandinavian ancestry at 7.4%. However, Nicole had a totally different and higher percentage at 11.4% Scandinavian. The Doctors, the Inside Edition reporter, and the Dahm triplets themselves were totally shocked at the amazing results. It turns out, these amazing ancestry DNA results might reveal even more about DNA science than previously known…
Dr. Travis Stork said, “I think the answer here is that we’ve come so far in terms of genetic testing, but you can’t just spit in a cup and have every single answer that you are looking for.” On Inside Edition, another set of triplets had similar results with another DNA kit. Only one set of triplets had results that were extremely close which was a test done with Ancestry DNA. Perhaps one day, at-home testing for ancestry will become even more streamlined and accurate. However, in the meantime it’s definitely interesting to get a peek inside where your ancestors may have descended from many years ago!
The at-home tests seem to be imperfect as far as percentages go, however they do undoubtedly offer insight into one’s background and ethnic makeup. Lisa mentioned on the show that while she was very interested in pursuing her own ethnic background, she might not go the route of the at-home DNA test. Instead, she said she would probably have a personalized test run by a doctor or genetic scientist. This kind of testing is definitely on the more expensive side, but are probably far more accurate. However, if you’re on a limited budget but still want to know more, an at-home test certainly won’t do you any harm! …
Elie Dolgin January 18, 2011 Kurt Hoffman forward.com
DNA tests to uncover Jewish origins have been offered for decades by companies such as Houston-based Family Tree DNA and DNA Tribes of Arlington, Va. They have shown, for example, that many Hispanic Americans likely descended from Jews who were forced to convert or hide their religion more than 500 years ago in Spain and Portugal. Yet although standard ancestry-testing platforms can point to centuries-old Jewish origins, none would have flagged Pickrell’s relatively recent Semitic pedigree.
That’s because most DNA tests have traditionally relied on only two small parts of the genome: the Y-chromosome, which is passed down almost unchanged from father to son, and mitochondria, which mothers pass faithfully to their offspring. Because these stretches of DNA remain relatively consistent from one generation to the next, they are particularly useful for testing direct-line paternal and maternal ancestry, respectively; however, they essentially ignore the bulk of someone’s DNA ancestry and cannot detect genetic signatures that cross gender lines…
CeCe Moore, a 41-year-old amateur genealogist who runs a television production company in Orange County, Calif., is one such customer. In 2008, Moore tested her mitochondrial DNA and her father’s Y chromosome, but found no traces of Jewish heritage. Then, last year, she obtained her DNA readout from 23andMe and learned that a small but significant amount of her genome appeared to be of Ashkenazi origin…”
“Published on Sep 30, 2010
Ola tells CNN’s World’s Untold Stories about her experience when she found out her Neo-Nazi husband was also Jewish.”
My Dad isn’t my “Dad”
READING MY ANCESTRY DNA RESULTS! I BEEN LIED TO MY ENTIRE LIFE!
ANCESTRY DNA RESULTS! *SHOCKING* HER DAD ISN’T HER REAL DAD
5 things to know about the Golden State Killer’s case Author: Staff
Published: 11:07 AM PDT April 27, 2018
Updated: 1:11 PM PDT April 27, 2018 kare11.com
ABC10’s Walt Gray sat down with criminal defense attorney Don Heller to learn more about what’s next for the suspect as he awaits his legal fate.
“..4. Genealogy plays a major role in this case. Investigators used a free genealogy website to connect the killer’s to the crimes. Lead investigator Paul Holes said authorities didn’t need a court order to access GEDMatch’s large database. Heller explained, the information collected about the East Area Rapist’s distant relatives from the site was enough to move the case forward. ..”
Ever got your DNA tested? Why or why not? What did you find out? Any other comments, suggestions, feedback, questions, etc… regarding the content above or not mentioned that you suggest me sharing here?