Is it Safe to Get Your DNA Tested?

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Bob.Beeman
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Is it Safe to Get Your DNA Tested?

Postby Bob.Beeman » Thu Jul 06, 2017 9:54 am

A lot of organizations (Ancestry.com is only one) offer to test your DNA in order to understand your ancestral roots more completely.

This sounds like a fun thing to do and it can be as easy as spitting in a bottle or swabbing the inside of your mouth with a Q-tip and sending the sample to them.

The problem is that it is virtually inevitable that this information will eventually be hacked, and your DNA will become a matter of public record. Maybe not a big deal except that in the future "pre-existing conditions" may (or may not) once again be grounds for denial of medical insurance.

We have no control over our Ethnicity or DNA, but it IS AN ACTIONABLE DECISION whether to turn over your DNA to some company that may or may not keep it secret.

The National Institutes of Health has a brief summary of these issues here. For example, people of Ashkenazi Jewish extraction have unusually high incidences of Cystic Fibrosis and 33 other listed issues. African-Americans have a 1 in 11 chance of being a carrier of Sickle-Call Anemia.

Of course there are specific tests for all of these, but a racial/ethnicity pre-screen would indicate whether further testing might be profitable. It should be easy for these companies to set up frozen storage to preserve these samples voluntarily sent in should someone (not necessarily you) deem it desirable to do further testing.

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

-Bob Beeman.

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

Postby dbr » Thu Jul 06, 2017 9:57 am

I think you raise a good question. The ultimate answer may well be that future nightmares you may imagine are inevitable. I personally don't feel that the immediate future offers any danger.

The rule that applies, of course, is that being paranoid does not mean they are not really out to get you.

pangea33
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Re: Is it Safe to Get Your DNA Tested?

Postby pangea33 » Thu Jul 06, 2017 10:00 am

I'm not interested in providing that information either. It doesn't even seem that useful for identifying the family tree. Seeing that I have 6% DNA suggesting a particular nationality doesn't really give me more insight than researching ancestral birth records.

It seems to me that DNA results reveal a lot more information that could be useful to insurance companies, and it's highly unlikely the findings would be used to REDUCE my insurance rates. I'll just refrain from willingly providing my genetic material to a company with several of pages of boilerplate legal jargon for little payoff.

Jack FFR1846
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Re: Is it Safe to Get Your DNA Tested?

Postby Jack FFR1846 » Thu Jul 06, 2017 10:12 am

My sister in law paid the $300 to have this done. It said her ancestors were from Eastern Europe. Father's side is from Poland, mother's side from Lithuania. Boy, that $300 really went to good use. (/sarcasm)
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CWhea1775
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Re: Is it Safe to Get Your DNA Tested?

Postby CWhea1775 » Thu Jul 06, 2017 10:31 am

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.

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

Postby dbr » Thu Jul 06, 2017 10:34 am

CWhea1775 wrote: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.


No, but if you have grandchildren and you are paranoid enough you could imagine them paying the price about that kind of thing. But, honestly, I am not a campaigner about this but just pointing out theoreticals. The result could be a benefit to someone as well.

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

Postby jebmke » Thu Jul 06, 2017 10:47 am

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

Seems like little upside and significant downside. I can't imagine a scenario where I would volunteer to be tested.
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deskjockey
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Re: Is it Safe to Get Your DNA Tested?

Postby deskjockey » Thu Jul 06, 2017 11:13 am

dbr wrote:
CWhea1775 wrote: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.


No, but if you have grandchildren and you are paranoid enough you could imagine them paying the price about that kind of thing. But, honestly, I am not a campaigner about this but just pointing out theoreticals. The result could be a benefit to someone as well.


I hate to break it to you, but if your grand-kids were born in the last 10 years or so, the government (at least in the US) already sampled their DNA and tested for major genetic diseases. It's a routine part of newborn screening these days. See this article. It's a powerful tool to detect and treat genetic disease right from birth. Are some people wigged out by this? Yes! Are there downsides, too? Yes. Nevertheless, I think it's here to stay. Within a couple of decades you'll be the outlier if you haven't had your genome mapped.

I think services like Ancestry.com and others are simply the tip of the iceberg. The potential for genetically-tailored medical treatments is a big driver for all of this, and I expect to see developments in that field in the next decade or so.

I do see the downsides, but our current laws are pretty strong when it comes to separating genetic information from insurance decisions, and the momentum is too strong to stop this trend. These days, I tend to think about my DNA as simply another data point of mine that could be commoditized, like much of our previously private information (Gmail, anyone?).

goblue100
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Re: Is it Safe to Get Your DNA Tested?

Postby goblue100 » Thu Jul 06, 2017 11:26 am

Cliff notes. Off beat filmmaker becomes a suspect in a murder because they ran the DNA evidence against the public database from ancestry.com. I don't recall all of the science, but he didn't do it, and the match wasn't really close enough but the cops engaged in a bit of a witch hunt. I'm sure it was not pleasant for him.
Edit: His father was the one that had submitted the sample. They didn't think he did it, so they went after family members.

http://www.cbsnews.com/news/the-dna-of- ... gie-dodge/
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Buford T Justiice
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Re: Is it Safe to Get Your DNA Tested?

Postby Buford T Justiice » Thu Jul 06, 2017 11:46 am

How about just setting up a fake profile for you test and disclose your self to only those you want to disclose to?

user name, email address, even a fake drop box / p.o. box for the testing?

sid hartha
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Re: Is it Safe to Get Your DNA Tested?

Postby sid hartha » Thu Jul 06, 2017 11:57 am

I'd say if you think it's fun go ahead and do it. To my knowledge they are not doing a full genome sequence on you just looking at some genetic markers. I guess if you think they can't keep your personal information secure and anonymized that's a good reason not to do it, but they are high enough profile they should be able to keep that locked down, it would totally destroy their business if they didn't. And It's not a fly by night operation.

As an aside at some point dna sequencing will be ubiquitous. It will be the first line standard of care and everyone will probably want their genomes sequenced so that they can have the information to make informed medical decisions. At that point everyone will be in the same boat and it won't matter. I am sure some day I will probably be able to take a bit of someone's hair and have it sequenced for a hundred bucks. The technology is getting better and cheaper.

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

Postby lthenderson » Thu Jul 06, 2017 12:22 pm

Places like Ancestry.com, have the data in limited access encrypted databases. It can be deleted as soon as you get your results so that it isn't stored forever. If you are worried about someone swiping your DNA, it can be easily done by taking a bag of your garbage from your can outside or getting a swab from inside your house. If someone wants your DNA, there are easier ways to obtain it than hacking into Ancestry.com.

As for those that suggest the limited usefulness of knowing a % or your ethnic origins, that is like just knowing the type of frosting on your cake. Beneath that you have incredible power to further lines of your family tree by comparing your family tree with genetically related cousins. I have made great strides down several branches of mine by figuring out how many generations back someone is related and comparing my tree to theirs and then filling in the missing members and verifying with subsequent research. If you have no family tree online to compare with, yes knowing the % of your ethnic origin is some parlor trick and not worth the money.

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

Postby afan » Thu Jul 06, 2017 12:34 pm

I would not give up potentially sensitive information in order to get some vague claims about percent geographic origin of unknown accuracy or reliability. I could not imagine caring where some ancient ancestors may have visited on the historic route from Africa (where we all came from) to here.

As with any other information stored on computers, I would assume it will be hacked and stolen. If it is valuable to someone it would be sold.

So... not useful to me.
Potentially sensitive.
Virtually assured it cannot be protected.

= Don't do it.

The logic would be different if there were some useful reason to get the report. Or if I convinced myself that I cared that some ancestors, whose existence would remain a mystery to me, had spent some time in a particular part of Europe.
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fposte
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Re: Is it Safe to Get Your DNA Tested?

Postby fposte » Thu Jul 06, 2017 12:37 pm

I'm an adoptee, so I did it, as did my brother. It was in the glorious days of 23andme when they linked to tons of studies about research involved with various genes, but a lot of people clearly took likely results as being absolutely definitive so I'm not surprised they had to stop.

That being said, it was a relief for me to see the absence of some big bad markers, and it's shed light on at least one other condition, so I'm glad I did it. But that's a lot easier to say in hindsight when nothing that's likely to hurt me down the insurance line came up.

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

Postby cmdreset » Thu Jul 06, 2017 12:44 pm

Bob.Beeman wrote:
The problem is that it is virtually inevitable that this information will eventually be hacked, and your DNA will become a matter of public record. Maybe not a big deal except that in the future "pre-existing conditions" may (or may not) once again be grounds for denial of medical insurance.

[SNIP]

Am I being paranoid?

-Bob Beeman.


Not paranoid, you should make an informed decision.

A few things (not legal advice of course - this is random internet stranger advice)

(1) The Genetic Information Nondiscrimination Act (GINA) https://en.wikipedia.org/wiki/Genetic_I ... nation_Act protects you from discrimination on the basis of the test results alone for medical insurance (i.e. even before the ACA, you could not be refused medical insurance or charged higher rates because of the test result alone.) NOTE HOWEVER: Pre-ACA, a manifested disease (genetic or otherwise) would count as a pre-existing condition which could be used in deciding medical insurance rates or access. ALSO, GINA (still) doesn't apply for life, disability, or long-term care insurance.

(2) If you are an adult without manifested genetic disease, and do not have a family history of genetic disease, then the likelihood of discovering anything new and frightening on a genetic test is low (but not zero of course.) If the above two caveats don't apply (i.e. you or your blood relations have known genetic disease) then you will have to decide if you want to attempt to find out if you are potentially affected. Talk to a genetic counselor before taking the test if you want to make an informed decision.

(3) Regarding hacking - what would anyone do with that information? So far, no self-respecting company would use a genetic profile (like they might use a Facebook profile) to make a hiring decision. We know from human history that we don't need a genetic test to be discriminated against.

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

Postby scooterdog » Thu Jul 06, 2017 1:21 pm

Bob.Beeman wrote:We have no control over our Ethnicity or DNA, but it IS AN ACTIONABLE DECISION whether to turn over your DNA to some company that may or may not keep it secret.

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


Disclaimer at the outset: am professionally heavily involved with the genomics industry, and have been since my exit from academia almost 20 years ago.

I used to sell whole-genome SNP genotyping arrays and equipment back in the day to the researchers who would do Genome-Wide Association Studies (GWAS). In the mid-2000's there was quite the 'gold rush' to find new markers for common and rare disease. We were offered 50% off a genetic test (very similar to 23andMe) for the low price of $399 for myself and family.

Here I am very well-informed, and concerned enough about privacy (that you rightly surmise) that I have declined myself to get myself genotyped or sequenced. (I regularly attend genomic medicine / personalized medicine scientific conferences, and every so often a presenter will ask a show of hands who has been genotyped or sequenced; the audience that raises their hand is probably 10%, and the rest are asked 'well what about the rest of you?') The concerns and risks are real, and there's nothing so personally identifying as your specific genotypes. (It is known that as few as 50 markers can uniquely ID anyone in the world.)

Of course the research value is inestimable, and those who participate help move the science forward. For an interesting 'look' at what this data can produce, take a look at this Wired piece https://www.wired.com/2017/02/770000-tubes-spit-help-map-americas-great-migrations/.

And if you are interested in participating in a US NIH-sponsored research program, tracking one million volunteers across time looking at not only the biology (genetics), but also the environment and lifestyle that factors into human health, the All of Us program will start recruiting soon. https://allofus.nih.gov/ I've heard their new director, Eric Dishman, speak before and he's the appropriate person to lead this effort, as a former Googler who suffered for a long time the effects of a genetic disorder.

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

Postby aristotelian » Thu Jul 06, 2017 2:32 pm

DNA testing is perfectly safe...if you don't mind meeting a younger cloned version of yourself walking down the street. What could possibly go wrong?

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

Postby serbeer » Thu Jul 06, 2017 2:38 pm

Just wait some and you will have this test done for you totally free--by your friendly government.

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Re: Is it Safe to Get Your DNA Tested?

Postby azurekep » Thu Jul 06, 2017 4:31 pm

One benefit of any new technology is that it gives thriller authors something new to write about. ;) I happen to be reading an Icelandic thriller -- "Jar City" by Arnaldur Indridason. I'm only partway through the book, but it appears the killer is an insider (researcher) at an Icelandic genetic research/database facility and that he identifies his victim (his father) via the link of a rare disease, then tracks down his newly discovered father and murders him. This seems to be where the plot is heading, but don't know for sure, so don't consider this a spoiler. I understand Iceland is big in genetics and I think they have, or are establishing, a Government-based genetics database. Maybe scooterdog can correct me where I'm wrong.

In any case, regardless of data protection, there is always the insider threat.

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

Postby lthenderson » Thu Jul 06, 2017 4:36 pm

aristotelian wrote:DNA testing is perfectly safe...if you don't mind meeting a younger cloned version of yourself walking down the street. What could possibly go wrong?


Ancestry DNA testing only looks at roughly 700,000 of the roughly 3,000,000,000 markers in a genome or roughly 0.02% of your entire genome. Not enough for cloning.

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

Postby Rupert » Thu Jul 06, 2017 4:40 pm

serbeer wrote:Just wait some and you will have this test done for you totally free--by your friendly government.


They do it for free now. Just get arrested. See CODIS.

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Re: Is it Safe to Get Your DNA Tested?

Postby roymeo » Thu Jul 06, 2017 4:45 pm

Wow, according to the numbers I'm seeing here Ancestry.com's expensive compared to 23andMe.com. And they're the ones that ended up working through the FDA regulations for some of the medically important ones.
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Re: Is it Safe to Get Your DNA Tested?

Postby oldcomputerguy » Thu Jul 06, 2017 4:47 pm

Bob.Beeman wrote:A lot of organizations (Ancestry.com is only one) offer to test your DNA in order to understand your ancestral roots more completely.

This sounds like a fun thing to do and it can be as easy as spitting in a bottle or swabbing the inside of your mouth with a Q-tip and sending the sample to them.


DNA is medical information. Are you sure you want your medical information floating around in the cloud just for the sake of having "fun"?

I wouldn't.
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Re: Is it Safe to Get Your DNA Tested?

Postby Nowizard » Thu Jul 06, 2017 4:54 pm

Yep, sometimes rather than being paranoid, they are out to get you. That is called Rapanoia rather than paranoia according to one of my former mentors.

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Re: Is it Safe to Get Your DNA Tested?

Postby RadAudit » Thu Jul 06, 2017 5:10 pm

Bob.Beeman wrote:This sounds like a fun thing to do


Given your concerns, I doubt if the fun is worth the possible price.

As for me, DNA tests found a break in the family line about four or five generations ago. There go all the family stories down the tubes.
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SrGrumpy
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Re: Is it Safe to Get Your DNA Tested?

Postby SrGrumpy » Thu Jul 06, 2017 5:15 pm

scooterdog wrote:
And if you are interested in participating in a US NIH-sponsored research program, tracking one million volunteers across time looking at not only the biology (genetics), but also the environment and lifestyle that factors into human health, the All of Us program will start recruiting soon. https://allofus.nih.gov/ I've heard their new director, Eric Dishman, speak before and he's the appropriate person to lead this effort, as a former Googler who suffered for a long time the effects of a genetic disorder.


Pretty cool! Thanks for the link. Quite frankly, I think it would be selfish not to sign up for this.

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Re: Is it Safe to Get Your DNA Tested?

Postby freebeer » Thu Jul 06, 2017 5:20 pm

roymeo wrote:Wow, according to the numbers I'm seeing here Ancestry.com's expensive compared to 23andMe.com. And they're the ones that ended up working through the FDA regulations for some of the medically important ones.


+1 to 23andme.com. My Mom found a long-lost first cousin thanks to its family matches and they now spend an hour a week on the phone. I found close relatives as well, among the 1200 very distant ones. And, the ancestry information was of some entertainment value. But for me the medical benefits were the big win - I have a rare mutation that gives me an 800% higher chance than normal of eventually having a very treatable and possibly preventable vision problem (which means a 20% chance if I live until 80+) ... knowing this gives me a big leg up vs. going along blindly (pun intended). Even more importantly I have another recessive mutation that conveys some benefits for we who are heterozygous for that gene, but is extremely problematic for anyone with two copies of the allele. My kids now know and are prepared for testing when the time comes for them to have kids. Are there privacy concerns? Sure, but these benefits to me far, far outweigh them. But, if you do it be prepared for a skeleton or two to pop out of the extended family closet! That is a very real here-and-now issue vs. hypothetical Big Brother concerns.

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

Postby Steelersfan » Thu Jul 06, 2017 7:26 pm

I don't believe much in DNA testing for finding out where your ancestors came from so I won't get tested. I've got paper records centuries back into Europe to know anyway. I think it's "pretty safe", but if you want to get a couple of other opinions you should read these articles. Quick summary - when you get tested you grant the testing company the rights to sell your DNA profile. They say they don't disclose anything that would identify you, but who knows how valid that will be as time goes on. Once they have it, they have it for all time.

https://www.forbes.com/sites/realspin/2017/02/15/the-privacy-delusions-of-genetic-testing/#4fdcae551bba

http://www.slate.com/blogs/future_tense/2017/05/23/ancestrydna_s_terms_and_conditions_sparked_a_debate_about_ownership_of_genetic.html

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Re: Is it Safe to Get Your DNA Tested?

Postby azurekep » Thu Jul 06, 2017 7:29 pm

oldcomputerguy wrote:DNA is medical information. Are you sure you want your medical information floating around in the cloud just for the sake of having "fun"?

I wouldn't.


We can all rest assured. Google is beginning to remove private, confidential medical records from its search results. [/sarcasm]

Google begins removing personal medical records from search results

Seriously, though, I would have thought medical records ended up on the Dark Web, not the part of the web searchable by Google.

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Re: Is it Safe to Get Your DNA Tested?

Postby coincollector » Thu Jul 06, 2017 7:34 pm

The idea of DNA testing has always fascinated me but the security issues have always kept me away as well. It seems nothing is safe anymore these days due to constant data breaches. Although, most of our medical records are in the cloud these days whether we know about it or not. I fear this is one situation we won't be able to avoid forever.

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Re: Is it Safe to Get Your DNA Tested?

Postby CFIT » Thu Jul 06, 2017 9:10 pm

Our friends gave us DNA analysis with ancestry.com for Christmas. We declined since we didn't want our DNA linked to our names to be out on the Internet. Fortunately our friends let us submit with ancestry under their account using the names of our dogs. Somewhere out there "Blackie Dog" has relatives who also came from Scotland.

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Re: Is it Safe to Get Your DNA Tested?

Postby red5 » Fri Jul 07, 2017 4:33 am

Well I think the tide is certainly against taking the test. Anyhow, let me give you another tidbit to think about. Someone I know recently took the test and got the ethnicity results. But the major success was finding 400 possible genealogical matches via DNA similarities. Some of them are pretty close matches too. So I realise that you did not mention family history but if that is something that you are interested in then the test could be worth it.

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Re: Is it Safe to Get Your DNA Tested?

Postby JPH » Fri Jul 07, 2017 7:26 am

The percentages of regional backgrounds will vary quite a bit depending on which testing service you use because they compare the sample to different standards. I'm not very concerned about misuse. I don't see how it is much different than allowing an insurance company access my medical records or answering the question "Have you had cancer?" Perhaps if my profile showed low risk they would offer me a lower rate. It is a very personal decision, however.
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Harley BenV
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Re: Is it Safe to Get Your DNA Tested?

Postby Harley BenV » Fri Jul 07, 2017 8:50 am

Yes it is if you have some sort of uncertainty in your family regarding the genetical disorders or diseases.

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Re: Is it Safe to Get Your DNA Tested?

Postby Harley BenV » Fri Jul 07, 2017 8:51 am

May I ask you why? Why do you want to get it tested? It is totally safe though.

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

Postby Geneyus » Sun Jul 09, 2017 8:53 am

Rupert wrote:
serbeer wrote:Just wait some and you will have this test done for you totally free--by your friendly government.


They do it for free now. Just get arrested. See CODIS.


It actually became more limited this past year. We used to be able to demand a blood draw for DUI, if you had a previous DUI or you were suspected of being under the influence of something other than alcohol.

I was told the Supreme Court (not sure if it was U.S. or my state) recently said we have to get a warrant for all blood draws. It's incredibly inconvenient, because we have to wake up a judge in the middle of the night to sign a warrant and wake up firemen to come take blood. Blood draw is very invasive for an arrestee, but we're seeing more and more DUI's where someone blows 0.00% on a breathalyzer due to pain killers and other substances. There's so much hassle and hours of paperwork involved with DUI's now, I've heard some officers just call family to pick them up to avoid it.

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

Postby Geneyus » Sun Jul 09, 2017 9:00 am

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.

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Re: Is it Safe to Get Your DNA Tested?

Postby sawhorse » Wed Jul 12, 2017 5:34 am

Here is an article on what happens to your genetic data when you take a commercial genetic test.

http://www.citigen.org/2017/07/12/what- ... stry-test/

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Re: Is it Safe to Get Your DNA Tested?

Postby halfnine » Fri Jul 14, 2017 5:19 am

Is anyone aware of any of company abroad that does DNA testing? Preferably where one could do it anonymously.

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

Postby Steelersfan » Fri Jul 14, 2017 6:25 am

halfnine wrote:Is anyone aware of any of company abroad that does DNA testing? Preferably where one could do it anonymously.


To determine where your ancestors came from? Or medical testing?

What country do you live in, or where do you want to determine ancestry?

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Re: Is it Safe to Get Your DNA Tested?

Postby Rupert » Fri Jul 14, 2017 9:06 am

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.

Dude2
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Re: Is it Safe to Get Your DNA Tested?

Postby Dude2 » Fri Jul 14, 2017 10:12 am

goblue100 wrote:Cliff notes. Off beat filmmaker becomes a suspect in a murder because they ran the DNA evidence against the public database from ancestry.com. I don't recall all of the science, but he didn't do it, and the match wasn't really close enough but the cops engaged in a bit of a witch hunt. I'm sure it was not pleasant for him.
Edit: His father was the one that had submitted the sample. They didn't think he did it, so they went after family members.

http://www.cbsnews.com/news/the-dna-of- ... gie-dodge/

That was very compelling. Thank you for the link.

c078342
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Re: Is it Safe to Get Your DNA Tested?

Postby c078342 » Fri Jul 14, 2017 2:36 pm

Yikes, I can't believe you people are so paranoid about privacy. Get over it. Many people using DNA testing, I will bet, are of Medicare age, so pre-existing conditions are moot. The only "danger" I see is a surprise re ancestry. I knew by paternal family was from England since the Pilgrims and that my maternal side was from the Rhine valley, via Ellis Island in the late 1800's. What Ancestry.com told me was I am 39% Scandinavian, 30% Irish, 11% Italy/Greece, 8% British, and 5% both Iberian Peninsula and Western European, among other tidbits. Well, the Scandinavian part I can see since the Vikings were largely settled in the area I knew my ancestors were from. The Irish part is a complete mystery, no one in my family ever mentioned Irish family, same for Italy/Greece. My mother was daughter of 1st generation German immigrants. So go figure. I plan on additional DNA testing by others when I get some play money.

c078342
Posts: 98
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Re: Is it Safe to Get Your DNA Tested?

Postby c078342 » Fri Jul 14, 2017 2:40 pm

Is anyone aware of any of company abroad that does DNA testing? Preferably where one could do it anonymously.


Oxford Ancestors http://www.oxfordancestors.com/

Read some of the works of Bryan Sikes -- more or less specific to the British Isles but very interesting

mnaspbh
Posts: 141
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Re: Is it Safe to Get Your DNA Tested?

Postby mnaspbh » Fri Jul 14, 2017 3:06 pm

c078342 wrote:Yikes, I can't believe you people are so paranoid about privacy. Get over it. Many people using DNA testing, I will bet, are of Medicare age, so pre-existing conditions are moot. The only "danger" I see is a surprise re ancestry. I knew by paternal family was from England since the Pilgrims and that my maternal side was from the Rhine valley, via Ellis Island in the late 1800's. What Ancestry.com told me was I am 39% Scandinavian, 30% Irish, 11% Italy/Greece, 8% British, and 5% both Iberian Peninsula and Western European, among other tidbits. Well, the Scandinavian part I can see since the Vikings were largely settled in the area I knew my ancestors were from. The Irish part is a complete mystery, no one in my family ever mentioned Irish family, same for Italy/Greece. My mother was daughter of 1st generation German immigrants. So go figure. I plan on additional DNA testing by others when I get some play money.


Even if there are zero consequences to getting my DNA tested, I don't want to risk making my children or grandchildren uninsurable or subject to employment discrimination just because they might have inherited an increased risk for some condition from me or my parents. I don't want them getting barred from purchasing long-term care insurance or life insurance (which can happen under current law) or anything else in the future as laws change.

Once you've had your DNA tested, you can never answer "no" to any questions about it on any application without committing fraud. Your descendants can't either, if the question asks if their parents or grandparents have been tested.

This kind of discrimination isn't a crazy paranoid concern. It's already starting to happen for LTCI and life insurance in some cases. And just look at the history of racial discrimination in the South ("a single drop of blood") for a very real example.

The ancestry tests aren't even very accurate. 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?

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

Postby snugharbor » Fri Jul 14, 2017 4:10 pm

DH and I have done 23 and me. I have also given permission at Brigham and Women's hospital to use my results they were able to obtain when I had pretesting for my mitral valve repair of one year ago. B&W is involved with several other hospitals in research.

We were not able to have children. We are both retires and on Medicare. So I felt that I was well positioned to avoid any harm from contributing and I am happy to help present and future generations if any of my information proves useful.

My brother is involved in medical research with a leaning towards genetics. He was able to use our 23 and me info to check out a few small medical issues and inheritance factors. Nothing serious but it has been helpful. My DH is a survivor of Non Hodgkin's Lymphoma diffuse large B cell. He was in a clinical trial at Massachusetts General and they are keeping an eye on him pretty much for the rest of his life which we hope to be a long time.
He is going on eight years cancer free.

I might have felt differently about it if we had children and grandchildren.

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

Postby Slacker » Fri Jul 14, 2017 5:01 pm

roymeo wrote:Wow, according to the numbers I'm seeing here Ancestry.com's expensive compared to 23andMe.com. And they're the ones that ended up working through the FDA regulations for some of the medically important ones.


I read an article about 3-4 months ago discussing how 23andMe were conducting the testing at a discount because their real business model is to build a library of human genetics. Something that would contain an anonymous encyclopedia of human genetics that they could then sell to pharmaceutical companies, non-profits, research groups, etc.

Popular Science article
23andMe To Sell Customers’ Genetic Data To Biotech Company

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

Postby Steelersfan » Fri Jul 14, 2017 5:16 pm

c078342 wrote: What Ancestry.com told me was I am 39% Scandinavian, 30% Irish, 11% Italy/Greece, 8% British, and 5% both Iberian Peninsula and Western European, among other tidbits. Well, the Scandinavian part I can see since the Vikings were largely settled in the area I knew my ancestors were from.


The last Viking invasion of England was 1000 years ago, and there's been a lot of intermarrying since then. I've seen reporting of quite a few people with 100% U.K. ancestors and the percentage due to the Vikings is maybe in the 4% - 6% range, max. There's something else going on.

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

Postby sawhorse » Fri Jul 14, 2017 5:37 pm

My results from 23andme weren't entirely accurate. They said I am lactose intolerant, have detached earlobes, have a longer ring finger than middle finger, and don't have a widow's peak. They said my husband isn't balding, has a shorter second toe than big toe, and has detached earlobes. All wrong.
Last edited by sawhorse on Fri Jul 14, 2017 5:39 pm, edited 1 time in total.

aqan
Posts: 184
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Re: Is it Safe to Get Your DNA Tested?

Postby aqan » Fri Jul 14, 2017 5:38 pm

Buford T Justiice wrote:How about just setting up a fake profile for you test and disclose your self to only those you want to disclose to?

user name, email address, even a fake drop box / p.o. box for the testing?

thats what i did :) still awaiting results.
so far I didn't provide any research info they kept asking for, wanted to see the results first. I'm happy to help them create the database and hopefully find cure to some diseases. They will probably make billions of dollars selling the database to big pharma but I'll be happy as long as the side effect is cure for diseases/saving the world :happy


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