The Royal Baby and Genetic Privacy
Is it a problem to learn your ancestry from a newspaper story?
Earlier this week, 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, nee Middleton. Evidently 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.
A recent publicity stunt shows that the lack of privacy will extend even to his genetic makeup and heritage. In June the prestigious London Times published a front-page story in which it revealed "the Indian ancestry of William." The person second in line to the monarchy apparently has a multi-ethnic heritage. The Telegraph reported one of the more oddball reactions to the findings:
Indian commentator Swapan Dasgupta said the discovery of Indian DNA in the prince had righted an historical wrong. Most of India's invaders and occupiers, including the Aryans and the Mughals, had eventually become Indian, except the British. "They came as foreigners but got absorbed. I'm happy the Indian strain remains in the British monarchy. India may have been lost [to Britain], but an Indian remains," he said.
The Times story was based on some genealogical and genetic sleuthing by BritainsDNA. The genetic testing company traced out the genealogy of Diana Spencer, the royal baby's grandmother, and found that six generations back one set of her 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 their 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 until the birth celebrated earlier this week.
The company's genealogical research identified a couple of distant relatives who, like Diana, are also direct matrilineal descendants of Eliza. The two agreed to contribute their DNA for testing—all matrilineal descendants of Eliza would carry her 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. The company found that the cousins' mitochondria belonged to the rare haplogroup R30b, which so far has been found 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 and 0.8 percent South Asian. The rest of their DNA was of European origin.
Of course, George Alexander Louis has inherited his mitochondria from his mother and so will not carry Eliza Kewark's R30b version. Nevertheless, the folks at BritainsDNA suggested that it's "very likely" that William's progeny will carry a trace of subcontinental DNA. Perhaps, but more likely not. There is 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.
Diana Spencer's cousins are seventh-generation descendants of Eliza Kewark who have inherited a tiny proportion of their DNA from her. Subsequent recombination then may have taken George Alexander Louis' eight-generation grandmother's DNA completely out of his genetic makeup. I'm sure that BritainsDNA would be happy to offer free testing should the family be interested in the issue.
Naturally, some observers worried that BritainsDNA and The Times violated the family's genetic privacy. Over at the New Statesman, reporter Alex Hern asked, "Are there ethical lapses in the Times' story on William's 'Indian ancestry'?" Noting the questionable issue that The Times published a discount coupon for genetic testing from BritainsDNA alongside the report, Hern added: "There is a wider issue at stake here, which is that the story reveals information about the genetic make-up of someone who has not consented to any DNA tests" (emphasis his). He continues: "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 bioethical think tank, the Foundation for Genomics and Population Health, declared 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." Some people may be more than just distressed by unconsented revelations about their genetic heritage—say, Sen. Elizabeth Warren (D-Mass.).
In the royal baby's case, both Brice and Hern acknowledge that the revelations are trivial. But what if the gene sleuths had uncovered and reported finding genetic variants that are associated with an increased risk of some serious disease? As someone who has posted his genetic information online, my first reaction is: So what? (For what it's worth, my mitochondrial haplogroup happens to be U5a2a.) After all, everybody carries gene variants that increase or reduce their risks of various diseases. It's no big deal. (In my case, I have some variants that suggest 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 with me. "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 notes. "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 surreptitious genetic testing 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. She offers scenarios in which surreptitious 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, but the plain fact is that as genetic testing gets cheaper and more widely available people will become more comfortable with what it does and does not reveal. Consent will often be beside the point. 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. Personal enemies may well try to undermine one another by posting genetic information online, but that will surely be less damaging than run-of-the-mill backstabbing gossip is today. 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.
That being said, some folks now may well not want to find out information about their genetic makeup from reading the morning's headlines. When it comes their DNA, others may want to invoke the principle of self-ownership, that is, the moral right to bodily integrity and exclusive control of your own body and life.
As it happens, in November 2012 the Presidential Commission for the Study of Bioethical Issues issued a report, Privacy and Progress in Whole Genome Sequencing, that analyzed issues relating to genetic privacy. The commission recommended that states and the federal government set a consistent set of standards protecting genetic privacy. 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."
While I have some sympathy for folks currently worried about their genetic privacy, I want to remind them that their genetic information is not some especially vital or dangerous kind of fact or knowledge about themselves. 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 (think here of HIPAA privacy regulations), I predict that most of us will regret adopting such a prohibition sooner rather than later.