Is it Safe to Get Your DNA Tested?

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Steelersfan
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Re: Is it Safe to Get Your DNA Tested?

Postby Steelersfan » Fri Jul 14, 2017 6:17 pm

mnaspbh wrote: As others have observed, it's very likely you'll get different results if you get tested by different companies. When the tests disagree, what do you do with the results?


I've seen the results of quite a few ancestry tests. The results WILL differ, sometimes substantially so.

AF_Engineer
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Re: Is it Safe to Get Your DNA Tested?

Postby AF_Engineer » Fri Jul 14, 2017 11:04 pm

I think the potential benefits of DNA testing (particularly for personal medical purposes, which I've done) outweighs the risks, which I think are a bit overblown. I personally think the risk is fairly low of anyone making off with your DNA data for nefarious purposes. Most BH's guffaw at folks who buy physical gold to prepare for world disaster...I think the hyperbole of DNA data leaks is also a bit exaggerated.

This will probably freak out those suspicious of the gov't, but I'd like to see a mandatory DNA database that includes the data for every American, for the primary purpose of preventing/solving crimes. With the vastly improved DNA science, pinning crimes on perps using DNA evidence would drastically reduce crime rates. Of course it's the same challenge as electronic voting, you'd have to make that DNA database inpentenatrable to cyber crime, I don't think we're there yet.

My advice - if you're to get some benefit or satisfaction from the DNA test, I'd say go for it and rest easy. My $0.02.

Jnick55
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Re: Is it Safe to Get Your DNA Tested?

Postby Jnick55 » Sat Jul 15, 2017 12:25 pm

It seems that DNA test results might not be kept confidential by DNA testing companies:

http://www.jdsupra.com/legalnews/alaska ... ves-60156/

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watchnerd
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Re: Is it Safe to Get Your DNA Tested?

Postby watchnerd » Sat Jul 15, 2017 1:25 pm

Bob.Beeman wrote: Am I being paranoid?


Okay, you caught us...we're collecting DNA samples from curious Americans and making a secret clone army in the jungles of South America.
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j0nnyg1984
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Re: Is it Safe to Get Your DNA Tested?

Postby j0nnyg1984 » Sat Jul 15, 2017 3:08 pm

There is no way I would ever submit to any of these tests. Call me paranoid, I don't care, but I don't want that information out there.

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celia
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Re: Is it Safe to Get Your DNA Tested?

Postby celia » Sat Jul 15, 2017 3:26 pm

Not only can you set up a fake profile, but you can submit DNA for others using fake names. So which of the dozen elders that I had tested are really me (if any)?

...or could all of them be me (submitted at various times)?

What I am doing for part of my genealogy projects is downloading the data for each person after the results come in, then delete it from Ancestry. Then after the person dies, I wait a few years then upload the results to 23andme.

Since many genealogists are elderly, this will be a way to connect to younger generations who are into things like this. Maybe my grandkids will one day be interested in my research.

neveragain
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Re: Is it Safe to Get Your DNA Tested?

Postby neveragain » Sat Jul 15, 2017 6:56 pm

You can get your DNA tested just for ancestry findings and they won't test it for health. I didn't pay extra for the health portion because I'm sure anyone could get their hands on those results.

The ancestry stuff, I don't care if anyone knows about that.

InMyDreams
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Re: Is it Safe to Get Your DNA Tested?

Postby InMyDreams » Sun Jul 16, 2017 10:29 am

neveragain wrote:You can get your DNA tested just for ancestry findings and they won't test it for health. I didn't pay extra for the health portion because I'm sure anyone could get their hands on those results.


Sounds like you went to 23andme, but regardless of which testing company - each company uses a single testing chip, and all samples for that company are run using that chip. The raw data file generated from the test will contain the same SNP tests whether the health report feature was paid for or not (with individual results varying for each SNP test, of course).

You may not have paid for them to analyze those results to generate "health reports," but you can pay them to analyze them at any time -or take your raw data to a third party and have them do it. I think I've heard it's as low as US$5, but not sure.

AncestryDNA allows you to opt out of their health data research; I just saw that familytreeDNA is offering to analyze your Family Finder results for health reports for US$49.

I'd be interested to know if anyone who has applied for insurance that has been asked if they were tested - were you asked for the results? for the raw data or for the reports?

Last - you can simply delete your tests from each of the test sites - they will do that, and you will no longer be able to get them. I suppose they have back ups of their data. Could an insurance company compel them to restore from back up? Seems unlikely. Better do delete before you apply, tho ;)

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VictoriaF
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Re: Is it Safe to Get Your DNA Tested?

Postby VictoriaF » Sun Jul 16, 2017 12:36 pm

DNA testing has no benefits and has many irreversible potential issues.

The ancestry information is too imprecise to be useful. Even if you find some new blood among your ancestors, it does not tell you where the owners of that blood actually lived or their actual culture and habits. A Swedish vagabond may have caught your Polish great-great-greatmother unawares in the bushes; but you will be making up stories of victorious viking raids.

The genetic health information is pretty useless as well, apart from a minuscule number of cases such as breast cancer of Ashkenazim Jewish women. The metabolic theories of cancer and of other chronic diseases have far more substance and promise, but nobody wants to hear about cutting down carbs and eating broccoli.

In contrast, the consequences of sending your DNA into the wild can be devastating. Apart from the ability to get health insurance, there could be other future consequences, e.g., inability to establish your identity against identity theft.

Victoria
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azurekep
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Re: Is it Safe to Get Your DNA Tested?

Postby azurekep » Sun Jul 16, 2017 1:53 pm

InMyDreams wrote:
Last - you can simply delete your tests from each of the test sites - they will do that, and you will no longer be able to get them. I suppose they have back ups of their data. Could an insurance company compel them to restore from back up? Seems unlikely. Better do delete before you apply, tho ;)


If a DNA database is like any other database, when you, the individual, delete the results, the results will still reside on the server. A cynical mind will say that the info will eventually be sold.

Also, just think back over recent years. When you apply for any kind of utility or service, you'll likely find you are asked increasing amounts of personal information. It used to be just name and address. Now it's SSN, DOB, credit card number, landline number, mobile number and so on. People readily offer up this information and companies increasingly feel empowered to ask for it.

Plus, companies record telephone conversations. (And if you refuse to be recorded, you'll likely get slower service. ;) ) If you've had DNA testing done and tell an insurance company that you haven't, that could potentially be information that comes up in a lawsuit.

Just looking at worst case...

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senior83
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Re: Is it Safe to Get Your DNA Tested?

Postby senior83 » Sun Jul 16, 2017 2:35 pm

As a Counterpoint to what a lot of people are saying here, I am a very privacy-conscious individual, and I did get the 23andMe test. This was quite a while ago before the FDA Crackdown that caused 23andMe to water down their results. At that time I was given access to a lot of digested health reports rather than having to dig through the raw data which I have done.

While it is obviously not something that would work for a lot of people, I have reviewed journal articles based on some gene variants that I have related to a medical condition. While we were very aware that this was only about two steps better than reading tea leaves, it did help my doctor and I choose a medication strategy for this condition.

I'm less concerned with the disclosure of my genetic data, even given the realities of the United States Healthcare Market, than I am with understanding myself and potentially getting pointers to improved starting places for medical treatment. I'm also quite happy to contribute to research. There are a lot of different ways to look at the problem.

neveragain
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Re: Is it Safe to Get Your DNA Tested?

Postby neveragain » Mon Jul 17, 2017 10:52 pm

VictoriaF wrote:DNA testing has no benefits and has many irreversible potential issues.

The ancestry information is too imprecise to be useful. Even if you find some new blood among your ancestors, it does not tell you where the owners of that blood actually lived or their actual culture and habits. A Swedish vagabond may have caught your Polish great-great-greatmother unawares in the bushes; but you will be making up stories of victorious viking raids.


I am 67% Scandinavian according to my DNA test, so that tells me the bulk of my ancestors lived in Scandinavian countries, although it can't give precise countries, of course. It also tells me I can be fairly sure I'm descended from many Scandinavian people, probably more than one in my ancestry.

For some people, that's all they want to know.

mouses
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Re: Is it Safe to Get Your DNA Tested?

Postby mouses » Mon Jul 17, 2017 11:15 pm

CWhea1775 wrote:On the other hand... My wife found out that she is 1/4 European Jewish, something that was totally lost in the family history. Her Dad's family had converted their history into being from "Germany" at some point in time.

And a branch of my family were early converts to Mormonism, and my genetic testing revealed these cousins in Utah and we found the link in our family trees.

To the original question, I do have some concerns about privacy, but at our age the insurance type concerns are largely irrelevant. If you are interested in genealogy the Ancestry tests, presentation, and link to family trees are pretty cool.


At my age the OP's concerns don't matter either. I thought this was fun. What surprised me was that ours matched what we know of family history. I was assuming there would be some hitherto unknown wild card in there.

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Re: Is it Safe to Get Your DNA Tested?

Postby mouses » Mon Jul 17, 2017 11:19 pm

VictoriaF wrote: there could be other future consequences, e.g., inability to establish your identity against identity theft.

Victoria


What? How would that work?

Atgard
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Re: Is it Safe to Get Your DNA Tested?

Postby Atgard » Mon Jul 17, 2017 11:23 pm

While it is wise to consider potential ramifications -- DNA testing, screening, customized medical treatments, and fascinating genetic reproductive issues are all coming in the near future -- I think the benefits here outweigh the risks.

While the ancestry stuff may be just for fun, using the raw data to get health reports can potentially be very useful for yourself or your children, possibly helping you diagnose a disease (or at least be on the lookout for symptoms), or prevent one (with proper nutrition or early treatment).

As someone said, you can just buy the "ancestry" kit (which was recently on sale for $49), then download the raw data and upload it to promethease.com to run health reports for $5. If you are paranoid, you can request your sample be destroyed, your data erased, and just keep your own copy yourself (may not be foolproof, but nothing is -- as others point out, any waiter can sample your DNA from your water glass at a restaurant).

It is likely that genetic testing will become commonplace for medical purposes, once we figure out that people with XYZ gene sequence react better to Drug A, while others react better to Drug B. So it is likely most of our genomes will be sequenced in the near future anyway. There will be HIPAA-type protections, and I believe they will institute safeguards against insurance companies using it against you -- too many people would strongly oppose such uses.

Hopefully everyone has seen Gattaca...

perl
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Re: Is it Safe to Get Your DNA Tested?

Postby perl » Mon Jul 17, 2017 11:53 pm

The ethical issue with DNA testing that comes up most frequently is paternity surprises. About 12% of people tested find that their biological father is not who they thought was their father. The impact on families of learning this can be enormous

jbranx
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Re: Is it Safe to Get Your DNA Tested?

Postby jbranx » Tue Jul 18, 2017 12:34 am

My wife and I weighed all these issues before ultimately deciding, mainly for medical reasons, to do the tests. In my case, a GI doc who cared more than I do, shipped off a specimen to two university labs for genetic testing for my condition without my permission! So, I decided I might as well do 23andme.com to see what else I could learn. Couple of useful things: very small chance of diabetes which is on one side of my family; high chance of A-fib, which I've alerted my internist to.

And I'm almost all English origin, which I knew, but didn't know about the 2% Neanderthal, which my wife had suspected!

My wife, a breast and other cancer survivor, decided to do a (very expensive) BRCA test so her nieces would have at least some assurance about their chances. Turned out no problem, so a big relief. She then went on to do the 23andme as well. She thinks it's a total joke and blocks their very frequent follow-ups.

I did have an unknown second cousin contact me. She was adopted far from our homeplace and was trying to find out more about her birth mother. My mom was able to supply her valuable info about her now deceased mother.

We are both on Medicare, no children, so we weren't that concerned about the downstream privacy issues, which are huge. DNA is not destiny, so I'm not sure it's any more useful than all those other tests that can be damaging with false positives. But maybe reveals far too much. All said, no regrets here.

azurekep
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Re: Is it Safe to Get Your DNA Tested?

Postby azurekep » Tue Jul 18, 2017 12:45 am

Atgard wrote:

There will be HIPAA-type protections .


A friend of mine recently had his medical records get mixed up with somebody else's. He was "tainted" with the label of a serious disease when he was actually perfectly healthy. And he got access to private medical information on the other patient that he shouldn't have had. It was a pain to straighten this out.

Then a couple of months later, a family member's medical records were compromised due to a data breach.

I don't think we're there yet in terms of safeguarding of data and protecting privacy.

Of course, many people know this going in, so it's a matter of trade-offs.

daveydoo
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Re: Is it Safe to Get Your DNA Tested?

Postby daveydoo » Tue Jul 18, 2017 12:46 am

Bob.Beeman wrote:
I guess its obvious I would never voluntarily give up my DNA. Am I being paranoid?


Kinda. Carrier state means very little -- unless you decide to have a kid with someone from your same ancestral village who's likely to carry the same minor allele. Anyone who wants your DNA can get it from your trash. And there's nothing there that's actionable -- unless you've been contesting a paternity suit. For the overwhelming majority of us, our medical future is not written in our DNA -- despite what 23&me and others would have you believe. The utility of linking "germline" genetic variants to disease states is not for diagnosis but for understanding the biology. (It's very different for the "special" genetics of cancers -- which differ from your own genome in actionable ways and that can direct therapy.)

The VA and NIH have two enormous and altruistic ventures -- the Million Veteran Program and the All of Us Program (formerly the Precision Medicine Initiative), respectively. They depend upon volunteers. The VA's effort is more than halfway to goal. If all were like you, the country would be nowhere with these. But it's like vaccines -- some benefit from the herd immunity while refusing the shots. The rest of us carry them.

Caduceus
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Re: Is it Safe to Get Your DNA Tested?

Postby Caduceus » Wed Jul 19, 2017 10:21 am

I've never done these tests before so I'm not sure how the application process works, but why not just send in a completely fictitious or truncated first name, with the caveat that if you do provide research-related answers to further science, you answer those honestly, and that you provide your true last name?

If your name is Mary Beth Johnson, could you just write M.B. Johnson with "M.B." in the name field? Then, reimburse a friend for paying for the order with her credit card so they don't have your actual name anywhere.

This way, the company gets accurate information for scientific research, potential relatives don't get misled by a wrong/fake last name, but no one knows your actual name. Would that work?

mouses
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Re: Is it Safe to Get Your DNA Tested?

Postby mouses » Wed Jul 19, 2017 11:51 am

azurekep wrote:
Atgard wrote:

There will be HIPAA-type protections .


A friend of mine recently had his medical records get mixed up with somebody else's. He was "tainted" with the label of a serious disease when he was actually perfectly healthy. And he got access to private medical information on the other patient that he shouldn't have had. It was a pain to straighten this out.

Then a couple of months later, a family member's medical records were compromised due to a data breach.

I don't think we're there yet in terms of safeguarding of data and protecting privacy.

Of course, many people know this going in, so it's a matter of trade-offs.


My state has legislation in progress what would let the feds rummage through our prescription records without a search warrant. I understand from reading news articles about this that a lot of other states allow this. So much for medical privacy. (The supposed justification for this legislation is to help the highly successful war on drugs.)

Plus some of the medical patient portals I have accounts on mandate fixed usernames and sometimes passwords that are so obvious they're a joke, except it isn't funny.

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Geneyus
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Re: Is it Safe to Get Your DNA Tested?

Postby Geneyus » Wed Jul 19, 2017 5:46 pm

Rupert wrote:
Geneyus wrote:My health care provider recently announced that you can submit a DNA sample, and they will see what prescription drugs work best for your body when prescribing treatment. Drugs influence people differently, and you can use your DNA to find out which drug works best for you, at the lowest dose. The future is now.

You should have heard the uproar and conspiracies when it was announced at our enrollment meeting. It's completely optional, but people were getting upset about the idea of people looking at their DNA. I think it's a great idea for serious treatments, like cancer drugs, but I'm not interested for flu and other illnesses.


By "health care provider" do you mean your health insurance company? If so, then you ought to wonder why your doctor(s) haven't mentioned this to you, right? The future is not now; it's the future. I think there are still very few conditions where this testing might be helpful to you, and your doctor(s) will surely mention it if you have one of those conditions.


I should have said "health care administrator". It's the actual company that handles claims, coverage, etc.


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