Does the Royal Baby Deserve Genetic Privacy?
Revelations about the British princeling's ancestry should remind us that DNA testing is no big deal.
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.
