Genetics

Does the Royal Baby Deserve Genetic Privacy?

Revelations about the British princeling's ancestry should remind us that DNA testing is no big deal.

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In July, much of the world was thrilled by the birth of George Alexander Louis to the couple William Arthur Philip Louis Mountbatten-Windsor and Catherine Elizabeth, née Middleton. The newborn stands third in line to be monarch of the rump remains of the British Empire. Given the celebrity of his parents and lineage, George Alexander Louis can expect little in the way of privacy. Even for his genes.

In June, the London Times published a front-page scoop unearthing "the Indian ancestry of William." Turns out the person second in line to the throne has a surprisingly multi-ethnic heritage.

The Times story was based on some genealogical and genetic sleuthing by the genetic testing company BritainsDNA. The company's scientists traced out the genealogy of Diana Spencer—the royal baby's deceased grandmother—and found that six generations back one set of Princess Di's ancestors consisted of an East India Company merchant named Theodore Forbes and his wife Eliza Kewark. 

Kewark was a native of the Indian city of Surat, where her family identified its ethnic heritage as Armenian. To make a long story short, one of the couple's children, a daughter, moved to Scotland, married a local, had kids, and so on down the generations, all the way until little George.

BritainsDNA's research identified a couple of distant relatives who, like Diana, are direct matrilineal descendants of Eliza Kewark. The two were tested, and indeed they carry Eliza's rare version of mitochondrial DNA. Mitochondria, the tiny power plants inside cells, have their own small and distinctive set of genes, which are inherited mostly unchanged from a person's mother. Eliza's R30b haplogroup has been found so far only in people living in South Asia. If the cousins carry that type of mitochondria, then so too would Diana and her children.

Other tests indicated that the genetic makeup of the cousins was also about 0.3 percent to 0.8 percent South Asian. The rest of their DNA was of European origin.

George Alexander Louis inherited his mitochondria from his mother and so does not carry Eliza Kewark's R30b version. Nevertheless, the folks at BritainsDNA suggested that it's "very likely" William's progeny will carry at least a trace of subcontinental DNA. 

More likely not. There's a big difference between genealogical ancestry and genetic ancestry. Ten generations back, a person has 1,024 genealogical ancestors, but given the vagaries of genetic recombination and sexual reproduction it is likely that each person has inherited his or her genes from only about 120 of them.

Naturally, some observers worried that BritainsDNA and the Times violated the royal family's genetic privacy. Over at the New Statesman, reporter Alex Hern fretted about "ethical lapses" by the Times. "Our DNA is the most basic data we have. No one should have to find out what it contains by looking at the front-page of a newspaper."

With regard to those involved in the publicity stunt, Philippa Brice at the Britain-based Foundation for Genomics and Population Health declared in an article on the foundation's website that "their ethical position is highly questionable." She added, "This example shows that public disclosure of genealogical information based on DNA can in some cases prove potentially distressing (or at least, annoying) to non-consenting family members." 

In the royal baby's case, both Brice and Hern acknowledge that the revelations are trivial. But what if the gene sleuths had reported finding genetic variants that confer an increased risk of some serious disease? 

The proper response to that is: So what? After all, everybody carries gene variants that increase or reduce their risks of various ailments. It's no big deal. (In my case, I have some variants suggesting a higher risk for macular degeneration and Crohn's disease, and less risk for Alzheimer's and melanoma.)

Even Brice appears to more or less agree: "Genetic exceptionalism is the belief that genetic information is special and deserving of greater considerations of consent to and privacy of sequencing and analysis than any other form of medical data," she noted. "In fact, genetic information is for the large part much more innocuous than other forms of personal medical data." Correct.

Nevertheless, some analysts argue that testing and publicizing someone's genetic information without their consent should be illegal. Elizabeth Joh, a law professor at the University of California, Davis, wants to make the nonconsensual collecting and testing of a person's genetic material into the crime of DNA theft. While William's cousins consented to have their genetic data shared, the actual people of interest to the reading public—William and baby George—did not. Joh offers scenarios in which clandestine genetic testing could be used by a politician to reveal a rival's disease risks, determine an athlete's chances of heart problems before offering him a contract, publicize a personal enemy's predispositions to alcoholism or obesity, check a romantic partner for possibly deleterious genes that could be passed on to progeny, or satisfy a creepy fan's interest in a celebrity's genetic makeup.

Joh's examples do sound disturbing, since they seem to violate a general sense of privacy. But on a broader level, as genetic testing gets cheaper and more widely available people will become more comfortable with what it does and does not reveal. Consent will be freely given, or simply seen as irrelevant.

Politicians will post their genetic test results online just as they now release their medical records. Prudent team owners will insist on genetic tests in addition to comprehensive physicals before signing up athletes to multi-million-dollar contracts. Couples contemplating children will eagerly seek out genetic information to find out possible risks. Celebrities will sell bits of their DNA along with their full genetic readouts online to fans. Personal enemies may well try to undermine one another by posting ill-gotten genetic information online, but that will surely be less damaging than run-of-the-mill gossip is today. 

In November 2012 the Presidential Commission for the Study of Bioethical Issues issued a report, Privacy and Progress in Whole Genome Sequencing, which analyzed issues relating to genetic privacy. The commission recommended that states and the federal government establish a consistent set of standards protecting genetic privacy, similar to those instituted in 1996 by the Health Insurance Portability and Accountability Act (HIPAA), which promulgated rules to protect individuals' medical records and other personal health information. Those policies, the commission stressed, "should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came."

The prospect of learning about one's risk of dire disease in the morning headlines does seem unsavory, but at the same time, genetic information is not an especially vital or dangerous category of knowledge. Such privacy regulations will needlessly reinforce unscientific notions of genetic exceptionalism among the public.

And since the sorts of rules recommended by the commission have the habit of metastasizing into malignant bureaucracies—the paperwork requirements of HIPAA are widely considered to be unnecessarily burdensome, wasting millions of man hours, costing tens of billions, and slowing the pace of medical research—it is highly likely that we will regret adopting such a prohibition sooner rather than later. 

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  1. Let me let you in a secret Ron, the Royal Family are really Germans. They got the job because they were Protestant and too stupid to try and cause any problems.

    1. Yep. Haus Sachsen-Coburg und Gotha–foreign! Alien! Must hide DNA. Also, Blackadder.

    2. Of course, the real scam is that the nobility and royal families have been Vikings since 1066.

    3. Scotch-German.

      The Grandfather of Sophie was James V of Scotland.

      His daughter was the Winter Queen of Bohemia and produced an infinite number of royal off-spring, including Sophie, who all English monarchs must be descended from.

      1. Actually James VI, and it’s not as if his ancestry was 100 percent Scottish (he was 1/4 French, and his claim to the throne came from his great-grandmother Margaret Tudor, who was English-Welsh-French-and whatever else. Really they’re like most of us – descended from a motley crew from all over the place

        1. Dammit, I cant keep my Scottish James numbers straight.

          But yeah, they are all inbred mutts.

          1. James VI of Scotland and James I of England are the same person and the first king after the Union of the two Crowns, which is different than the union of the two countries that happened about a 100 years later.

            It will be interesting to see the result Scottish Independence Referendum next year. My bet is on a continued union, but it will be close.

            The current queen is Elizabeth II of England, but also Elizabeth I of Scotland.

    4. The real reason they want to hide the genetic ancestry of the royal family is because they are lizard people, bent on world domination.

  2. You can oppose the public dissemination of personal genetic information without believing in some sort of magical exception. You could just hold a belief that peoples’ personal information (including their medical records, under which genetics falls) should be presumed private.

    This may be the age of social media sharerrhea, but for those of us who still value our privacy, consent is hardly “irrelevant.”

    1. You could just hold a belief that peoples’ personal information (including their medical records, under which genetics falls) should be presumed private.

      this and for all their faults, the royals are still part of the “peoples.”

  3. Fuck those inbred creeps. We’ve known their genetic makeup for about 400 years now.

  4. Consent will be…simply seen as irrelevant.

    The very words Warty lives by.

    1. You mean he doesn’t enjoy it when the altar boy does consent?

  5. Britain deserves to know if its king by birthright is predisposed to syphilitic insanity or, worse, enjoying the future’s version of twerking.

  6. Does the Royal Baby Deserve Genetic Privacy?

    I don’t know. At what point does a mass of cells become a person?

    Doh!

  7. Couple comments.

    1. It’s clear that the indian ancestry of the baby was NOT derived by taking his blood/saliva and doing DNA tests on it. It was found by old fashioned geneology. The DNA testing was on other distant cousins that shared the same lineage. Apparently with their consent.
    So it’s hard to say that HIS privacy was violated by researching public available information and testing some of his relatives with their consent.

    2. I do think that taking a sample of someone’s DNA without their consent, sending it for testing, and then publishing the information in the news media should be illegal. That could be used for all sorts of unsavory purposes, such as blackmailing someone with the news that a child was fathered by someone other than the mother’s husband.
    Again, that ISN’T how they figured out George’s ancestry, so that wouldn’t prevent this kind of geneological research.

    1. I agree with this:

      I do think that taking a sample of someone’s DNA without their consent, sending it for testing, and then publishing the information in the news media should be illegal.

      But not because it has anything to do with this (which shouldn’t even be illegal):

      blackmailing someone with the news that a child was fathered by someone other than the mother’s husband.

      1. I do think that taking a sample of someone’s DNA without their consent, sending it for testing, and then publishing the information in the news media should be illegal.

        I have to disagree. It depends on how that DNA was recovered. If obtained from your saliva from a discarded item in public and it is fair game, voluntarily no longer in your possession.

        Then they have the right to publish what they find no matter what peaked their interest in you, as they are not doing physical harm. Mental harm is not the reason blackmail and extortion violate the NAP principle. Mental duress is the means that these actions that do violate the NAP are accomplished. Outside of not being forced to make a decision you otherwise would not make, you have no right to a life free of duress.

        1. It’s illegal to pick through someone’s garbage and find out their personal information, isn’t it? Why shouldn’t be illegal to pick a napkin out of a public trash bin and do DNA tests on it? The fact that technology has enabled us to find personal information out from a wider variety of discarded material doesn’t really change the ethics.

      2. You don’t think that blackmail should be illegal?

        I’d like to hear the argument for why.

        1. Why should it be illegal? You don’t have the right to deny someone else’s freedom of speech merely because it exposes your wrongdoings. If you don’t have the right to forbid something, how do you have the right to forbid them accepting payment for not doing it?

          Blackmail would be a great social good if legal. As Walter Block says, if David Letterman had known blackmail was legal he might have only had sex with 2 of his employees, rather than 6.

  8. For some, geneology is ideology.

  9. Deserves’ got nothin’ to do with it.

    1. Buzzards gotta eat, same as worms.

  10. Live on the backs of the people, you give up certain expectations.

  11. Naturally, some observers worried that BritainsDNA and the Times violated the royal family’s genetic privacy. Over at the New Statesman, reporter Alex Hern fretted about “ethical lapses” by the Times. “Our DNA is the most basic data we have. No one should have to find out what it contains by looking at the front-page of a newspaper.”

    Walter Block would point out that privacy in the sense being used here is not a negative right with the same meaning as being secure in person, effects, or in one’s own home. If a third party wishes to investigate you through sources you have no possession of, they are not doing violence to you. If they obtain the DNA of a relative to determine more about you, and publish this information, the suppression of their research would be the aggression, not their research.

    1. I agree with THAT. Which is what happened here. They got the DNA from relatives voluntarily.

      But, suppose they had gotten a blood sample of the baby from the hospital, or picked a dirty diaper out of the palace trash bin or something. Then sent that in for testing without the family’s consent. IMO that would be a clear privacy violation.

      Being secure in one’s person and effect includes not having your trash rifled through or having hairs picked off your office chair for investigation, or having someone follow you around waiting for you to drop a straw in a trash bin.

  12. Sounds like much the same was done with Thomas Jefferson and Sally Hemmings descendants several years ago. Her descendants had the Jefferson family DNA, which apparently could have been either him or his brother.

    1. It was within two generations of Jefferson, not an uncommon occurrence among long established Virginian families.

  13. The way I see it, if they want to continue the farce of royalty, then they deserve whatever they get in terms of public scrutiny and invasions of privacy. No one makes them be royal. They could just relinquish their titles and go live like normal people. If you are going to go around calling yourself “Prince”, then you have signed up for having no private life.

  14. some genealogical and genetic sleuthing by the genetic

  15. some genealogical and genetic sleuthing by the genetic

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