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Thread: Your DNA: should it be private, or who cares?

  1. #31
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    Quote Originally Posted by Grant Hatch View Post
    If insurance companies are able to decline or increase your rates depending on genetics it kind of defeats the whole purpose of insurance in the first place.
    No, it doesn't. The whole point of insurance is that a group of people can all pay a small amount of money as insurance for something catastrophic that only happens to a small number of people. Some people will never have to use it, and so will end up having paid for nothing, whereas other people will experience the event and get covered by the fund. So if you know that person A is more likely to experience the event than person B, it makes sense to increase the premiums for that person.

    What I'm curious about is, some "genetic" information (I mean health-related, not just genetic) can be gotten from just looking at or talking to a person. Like if they smell like a smoker, or if they are overweight. Do insurance companies use that?
    As above, so below

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    Quote Originally Posted by Jens View Post
    What I'm curious about is, some "genetic" information (I mean health-related, not just genetic) can be gotten from just looking at or talking to a person. Like if they smell like a smoker, or if they are overweight. Do insurance companies use that?
    When my Mom (a nurse) worked for a health insurance company, they gathered detailed personal information. In certain cases the company even hired a private investigator to follow or film suspicious cases to see if the person was faking their injury or illness for the insurance money. It was apparently true often enough that they kept PIs on retainer.
    "I'm planning to live forever. So far, that's working perfectly." Steven Wright

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    Quote Originally Posted by Noclevername View Post
    That your wishes are ignored, and they do it anyway. Nothing can be done to stop it.
    That's not a scenario. You suggested we'd be " ...put in the position of having to DENY that it's NOT ours."

    How does that follow?
    How would I be in a position where someone is saying "this is your DNA" and I would have to deny it?
    They couldn't put me in that position without incriminating themselves.

  4. #34
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    Quote Originally Posted by Jens View Post
    What I'm curious about is, some "genetic" information (I mean health-related, not just genetic) can be gotten from just looking at or talking to a person. Like if they smell like a smoker, or if they are overweight. Do insurance companies use that?
    I am pretty sure smoker and overweight are the first couple of questions for life insurance. When I bought my house and got insurance, the very first question was "Do you own or plan to own a trampoline?". I thought it was a joke. It was not.
    Solfe

  5. #35
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    Quote Originally Posted by Jens View Post
    What I'm curious about is, some "genetic" information (I mean health-related, not just genetic) can be gotten from just looking at or talking to a person. Like if they smell like a smoker, or if they are overweight. Do insurance companies use that?
    You betcha!

    The realistic scenario is that they will interview you, often in your home.
    One of their questions will be: Do you smoke?
    You can say no, but if they suspect you lied about anything, they are free to simply deny you insurance and cancel your policy.

    [ EDIT ] Ah. Solfe said it better.

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    Back to genetics.... Should insurance companies have the right to demand your genetic profile before insuring? I think this is coming, and those with "bad" genetics will suffer higher premiums. If I was an insurance company owner I would be very interested in any information helpful in risk assessment.

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    Quote Originally Posted by Solfe View Post
    I am pretty sure smoker and overweight are the first couple of questions for life insurance. When I bought my house and got insurance, the very first question was "Do you own or plan to own a trampoline?". I thought it was a joke. It was not.
    You should have said, "Yes, but only so that I can install it in the front line so that insurance people don't get injured when I toss them out the window." But then again, I guess you shouldn't, because you wouldn't have gotten the insurance.
    As above, so below

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    Long time biochemist here.
    No one gets my DNA.
    We're already seeing how the mass of data can be used in unethical ways.
    There's no way that's going to get better.
    We're allowing ourselves to be coddled into walking into some nasty traps.

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    Quote Originally Posted by DaveC426913 View Post
    That's not a scenario. You suggested we'd be " ...put in the position of having to DENY that it's NOT ours."

    How does that follow?
    How would I be in a position where someone is saying "this is your DNA" and I would have to deny it?
    They couldn't put me in that position without incriminating themselves.
    I just had to delete a long reply.

    Short reply: Can't answer without going into politics because the insurance and health systems are all tangled up in politics & money.

    I think I'll avoid this thread from now on. Too tempting.
    "I'm planning to live forever. So far, that's working perfectly." Steven Wright

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    Quote Originally Posted by Roger E. Moore View Post
    I apologize to everyone on this forum and to the moderators.
    No apology is necessary.
    Quote Originally Posted by Grant Hatch View Post
    I don't believe Swift has shut it down, just warned against political/divisive/angry/legal consequences type discussion.
    Please don't comment about moderation in-thread, but that is correct. Talk about science, morals, personal concerns, insurance companies, but not anything to do with politics.
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  11. #41
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    Insurance companies already collect your genetic data, by proxy. They ask questions about familial diseases, about the cause of death of close relatives, and about diagnoses you have already received - all that is to some extent driven by your genes. And they'll weight your premium accordingly.
    Back in the 80s, a friend of mine worked as a programmer for an insurance company that was just beginning the move towards crunching big data. He coded their first system to assign premiums automatically, based on the data provided on the insurance application. One day, months after the application went live, they received a query from a man who felt his premium was too high. He was being charged extra for answers that suggested a familial fatal disease. On examining his form, it looked like this:
    Cause of death of mother: killed by bomb during WWII
    Cause of death of father: killed by bomb during WWII
    Cause of death of siblings (x3): killed by bomb during WWII

    He was being charge for a familial predisposition to aircraft ordnance impact.

    Grant Hutchison

  12. #42
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    Quote Originally Posted by Solfe View Post
    I am pretty sure smoker and overweight are the first couple of questions for life insurance. When I bought my house and got insurance, the very first question was "Do you own or plan to own a trampoline?". I thought it was a joke. It was not.
    The third life-insurance question is usually "Have you ever been diagnosed with depression?" If you have, no insurance (suicide risk). I was not diagnosed with depression until long AFTER I had life insurance, so I am able to keep it. Obviously I have not done myself in, so I consider myself a good risk... not that it matters should I ever need other life insurance.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
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  13. #43
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    Quote Originally Posted by Swift View Post
    Talk about science, morals, personal concerns, insurance companies, but not anything to do with politics.
    Okay, thank you. That helped a lot! Needed clarification there.

    At any rate, I do believe insurance companies might eventually be allowed to view your genetic archive, and then a choice will have to be made on their part: will they block part or all types of insurance for you (medical or life), or will they permit insurance but at higher rates for "risky" folks? It will not pay for companies to deny all insurance (no business), but there might be insurance pools and all the usual stuff, plus not banning you unless you personally are diagnosed with the bad XYZ. This person's family has a predisposition to depression, higher-risk pool maybe but not denied to an individual UNLESS the individual is diagnosed with depression himself. That person's family smokes tobacco, but that person will not be docked UNLESS she is also found to smoke. A diagnosis of a severe nature (psychopathy) might make a bad situation worse, not sure where that would go.

    Society will adjust to having all its secrets known, and no one will be happy about it.

    Remember: EVERYONE has garbage DNA.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    To throw more gasol... um, light on the subject, here is a paper fresh off the griddle (ignoring the "public policy" part). If you are of European descent, you are now very easy to identify. It doesn't bother me, after all I have fingerprints all over the place in files from my days in the Army, as a school teacher (substitute), and heaven knows what else. My DNA? Still don't care.


    http://science.sciencemag.org/conten...cience.aau4832

    Identity inference of genomic data using long-range familial searches

    Yaniv Erlich, et al. Science 11 Oct 2018:

    Abstract: Consumer genomics databases have reached the scale of millions of individuals. Recently, law enforcement authorities have exploited some of these databases to identify suspects via distant familial relatives. Using genomic data of 1.28 million individuals tested with consumer genomics, we investigated the power of this technique. We project that about 60% of the searches for individuals of European-descent will result in a third cousin or closer match, which can allow their identification using demographic identifiers. Moreover, the technique could implicate nearly any US-individual of European-descent in the near future. We demonstrate that the technique can also identify research participants of a public sequencing project. Based on these results, we propose a potential mitigation strategy and policy implications to human subject research.

    QUOTES: Consumer genomics has gained popularity (1). As of April 2018, more than 15 million people have undergone direct-to-consumer (DTC) autosomal genetic tests, with about 7 million kits sold in 2017 alone (2). Nearly all major DTC providers use dense genotyping arrays that probe around ~700,000 genomics variants and let participants to download their raw genotype files in a plain text format. This has led to the advent of third-party services, such as DNA.Land and GEDmatch, which allow participants to upload their raw genotype files for further analysis (table S1) (3). Nearly all of these services offer to find genetic relatives by locating identity-by-descent (IBD) segments that can indicate a shared ancestor. Finding genetic relatives can accurately link even distant relatives, such as 2nd or 3rd cousins (4–6) (fig. S1) and has led to multiple “success stories” within the genetic genealogy community, such as reunions of adoptees with their biological families (7).

    In the last few months, law enforcement agencies have started exploiting third-party consumer genomics services to trace suspects by finding their distant genetic relatives. This route to identify individuals, dubbed long-range familial search, has been predicted before (8) and offers a powerful alternative to familial searches in forensic databases, which can only identify close (1st-2nd degree) relatives (9, 10) and is highly regulated (11). In one notable case, law enforcement used a long-range familial search to trace the Golden State Killer (12, 13). Investigators generated a genome-wide profile of the perpetrator from a crime scene sample and uploaded the profile to GEDmatch ~1 million DNA profiles. The GEDmatch search identified a 3rd-degree cousin (12). Extensive genealogical data traced the identity of the perpetrator, which was confirmed by a standard DNA test. Between April to August 2018, at least 13 cases were reportedly solved by long range familial searches (Table 1 and table S2). Most of these investigations focused on cold cases, for which decades of investigation failed to identify the offender. Nonetheless, one case involved a crime from April 2018, suggesting that some law enforcement agencies have incorporated long-range familial DNA searches into active investigations. Parabon Nanolabs, a forensic DNA company, have announced that they set up a division that will use long-range familial searches and have already uploaded 100 cold cases to third-party DTC services (14). All of these suggest that long-range familial searches may become a standard investigative tool.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
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  15. #45
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    And a news article that reflects on the paper above, with more thoughts on the topic of DNA and privacy.

    https://www.sciencenews.org/article/...ericans?tgt=nr

    Genealogy databases could reveal the identity of most Americans
    Keeping your DNA private is getting harder
    By Tina Hesman Saey, 4:12pm, October 12, 2018

    QUOTES: In reality, though, identifying a person from a DNA match with a distant relative is much harder than it appears, and requires a lot of expertise and gumshoe work, Ellen Greytak says. She is the director of bioinformatics at Parabon NanoLabs, a company in Reston, Va., that has helped close at least a dozen criminal cases since May using genetic genealogy searches. “The gulf between a match and identification is absolutely massive,” she says.

    The company has also found that people of European descent often have DNA matches to relatives in GEDMatch. But tracking down a single suspect from those matches is often confounded by intermarriages, adoptions, aliases, cases of misidentified or unknown parentage and other factors, says CeCe Moore, a genealogist who spearheads Parabon’s genetic genealogy service. “The study demonstrates the power of genetic genealogy in a theoretical way,” Moore says, “but doesn’t fully capture the challenges of the work in practice.” For instance, Erlich and colleagues already had some family tree information from the 1000 Genome woman’s relatives, “so they had a significant head start.”

    Erlich’s example might be an oversimplification, Rohlfs says. The researchers made rough estimates and assumptions that are not perfect, but the conclusion is solid, she says. “Their work is approximate, but totally reasonable.” And that conclusion that almost anyone can be identified from DNA should spark public discussion about how DNA data should be used for law enforcement and research, she says.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    Quote Originally Posted by grant hutchison View Post
    He was being charge for a familial predisposition to aircraft ordnance impact.

  17. #47
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    http://www.startribune.com/project-s...ple/497065641/

    Want to be paid $100 for your DNA? It's happening in Minneapolis on the Skyway, and people are doing it (because they need the money). Insurance company project, detailed in article.

    No judgment, just stating facts.

    QUOTE: A scientific testing company has set up temporarily in the U.S. Bank Building skyway to collect biological information from 1,000 volunteers (well, they earn $100 for their time), including blood and saliva samples, and to use it to customize life insurance products.

    Skyway pedestrians in Minneapolis can earn $100 for samples of their blood, urine and saliva in the latest type of genetic research, this time to help develop life insurance products.
    Scientific Testing Partners, which set up in the second floor of the U.S. Bank building at the start of October, is seeking 1,000 participants in a project that illustrates the rapid expanse in genetic know-how and in its collection of data for business, public health, genealogy and academic research.

    "This was a great place to get a cross section of people," said Dan Callahan, a spokesman for Scientific Testing, as lunchtime walkers cruised past Wednesday.

    Such mass collection of genetic information for research has come a long way since the mapping of the human genome in 2003.

    The Mayo Clinic is participating in the federal All Of Us project to collect genetic data and biospecimens from 1 million people to identify how genes, lifestyle choices and environment affect health. The University of Minnesota has collected saliva and lifestyle data from visitors at the State Fair to study influences on child development.

    The genealogy company 23andMe has frequently provided anonymous genetic data to researchers and pharmaceutical companies and conducted its own studies. In 2015, it published a report in an academic journal on the genetic origins of motion sickness.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
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  18. #48
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    I sign off to give my DNA away to researchers every time I donate blood. Privacy is dead anyhow.
    Cum catapultae proscriptae erunt tum soli proscript catapultas habebunt.

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    Quote Originally Posted by Trebuchet View Post
    I sign off to give my DNA away to researchers every time I donate blood. Privacy is dead anyhow.
    So it seems to me the question still comes down to whether you would allow your DNA to be used.

    You can't prevent anyone from illicitly using it, but that's not quite the same thing.

    When you donate your blood there are legal constraints on what they're allowed to do with it. Such as, they can't hand it off to a third-party for research. Not with your personally-identifying information associated with it.

  20. #50
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    Quote Originally Posted by DaveC426913 View Post
    When you donate your blood there are legal constraints on what they're allowed to do with it. Such as, they can't hand it off to a third-party for research. Not with your personally-identifying information associated with it.
    That is my understanding. My wife was asked before one of her abdominal surgeries whether samples of her tissue could be donated to researchers (she has Crohn's disease). They even mentioned that there would be no traceable identifying information back to her. But even still, it required her explicit, signed permission.
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  21. #51
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    My personal belief is that the privacy issue re: personal DNA will be bypassed when gene-editing becomes so refined that no one uses anyone's DNA... directly. Can't say someone might not sneak a peek at my DNA, for example, and figure out where a particular gene tag goes, then duplicate it in a lab, throwing out my DNA sample. "Nope, did it completely on our own."

    However, there are always surprising discoveries to be made by looking at someone's actual DNA. Just recall:

    1. President Thomas Jefferson and Sally Hemings.

    https://en.wikipedia.org/wiki/Sally_...gs_controversy

    2. Grand Duchess Anastasia Nikolaevna.

    https://en.wikipedia.org/wiki/Grand_..._and_DNA_proof

    3. Richard III, King of England

    https://www.bbc.com/news/science-environment-30281333
    Richard III's DNA throws up infidelity surprise

    http://www.nature.com/articles/ncomms6631
    Identification of the remains of King Richard III

    4. King Tutankhamun and his Egyptian royal family

    https://news.harvard.edu/gazette/sto...t-take-on-tut/

    5. Going to ignore current DNA ancestry controversies, as they are too obvious and *** political ***. Your own DNA can work for you or against you, depending on what you do with it and why you're doing it. And, I guess, how you go about telling everyone the news. Not going to help you if you are in the KKK and nonwhite ancestry turns up in your blood--but maybe you deserve that one.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    There is, of course, Henrietta Lacks, whose DNA was used to found a major field of medical science without her knowledge or approval.

    https://en.wikipedia.org/wiki/Henrietta_Lacks
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    For the record, if I didn't make it clear, I am in favor of personal DNA privacy, to whatever degree possible.
    "I'm planning to live forever. So far, that's working perfectly." Steven Wright

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    For the record, I do not want anyone making child clones of me or creating children or mutant human-animals that are biologically half me, because I already have (grown) children and they are more than enough, thank you, it was fun the first time but no more of that. My wife and I have seven cats instead, plus all the ants still living in my car. No mutant crossbreed me's.
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    Quote Originally Posted by Roger E. Moore View Post
    For the record, I do not want anyone making child clones of me or creating children or mutant human-animals that are biologically half me, because I already have (grown) children and they are more than enough, thank you, it was fun the first time but no more of that. My wife and I have seven cats instead, plus all the ants still living in my car. No mutant crossbreed me's.
    (cancels plans)
    "I'm planning to live forever. So far, that's working perfectly." Steven Wright

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    If you decide to bust all your relatives by sending your DNA to a company that will tell everyone whether you have any rhinoceros genes, here's a handy comparison charts of DNA/ancestry services, done by a science editor. National Geographic even has one.

    https://www.sciencenews.org/article/...iew-comparison
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    This was a pretty good medium-length article, highly detailed and enjoyable, lots of diagrams and maps, about the pitfalls of using DNA testing to find your family and ancestors. Much pro-and-con, particularly with the difficulties in getting accurate information on what countries your folks came from. (The data is often wrong because the databases are not complete.)

    If you use the services, of course you lose some privacy, but perhaps that's not the main issue for you. YMMV.

    =================

    https://www.sciencenews.org/article/...k&context=2782

    DNA testing can bring families together, but gives mixed answers on ethnicity

    Ethnicity estimates vary widely depending on which company is doing the testing
    By Tina Hesman Saey 2:36pm, June 13, 2018
    There is something fascinating about science. One gets such wholesale returns of conjecture out of such a trifling investment of fact.
    Mark Twain, Life on the Mississippi (1883)

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    The reason "ethnicity estimates" vary widely is because "ethnicity" is something we invented without any genetic justification.
    It's bogus and divisive for these companies to even pretend they can tell people which of a small number of "ethnicity" boxes they fall into.

    Which is exactly what I alluded to at the start of the thread - I'm not sending my DNA to be analysed until the analysis is properly evidence-based. Until then, I would just end up with a bunch of labels attached to me, some of which might make sense, and some of which won't.

    Grant Hutchison

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    Quote Originally Posted by grant hutchison View Post
    The reason "ethnicity estimates" vary widely is because "ethnicity" is something we invented without any genetic justification.
    It's bogus and divisive for these companies to even pretend they can tell people which of a small number of "ethnicity" boxes they fall into.

    Which is exactly what I alluded to at the start of the thread - I'm not sending my DNA to be analysed until the analysis is properly evidence-based. Until then, I would just end up with a bunch of labels attached to me, some of which might make sense, and some of which won't.

    Grant Hutchison

    I can ony talk in reference to the Australian market, but some may be surprised that this approach is reflected by insurers. Genetic analysis by some "providers" is absurdly specific (I have seen one lengthy 'analysis' claim to identify a lifetime risk of developing asthma to 2 decimal places!) and is regarded by actuaries and underwriters with amusement.

    There are only a few autosomal dominant conditions that are of interest to insurers (Huntington's Chorea, FAP, PKD, for example) because these have appropriately evidence based actuarial data on disease onset. However, industry-imposed regulation prevents insurers from even asking a person to undergo a genetic test, much less using genetic information without their knowledge. Insurers do ask about family history, but can only use that information if there are appropriate actuarial stats to support its use.

    Many medical conditions are multi-factorial in aetiology and many include environmental components making the current generation of genetic analysis of limited value to an actuary. Plus, no genetic test will predict the likelihood and a car running a red light and T-boning the car of an insured....

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