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. “
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…”
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.
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…”
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?