21. June 2013 01:51
The Times newspaper has published a front-page story revealing that the Duke of Cambridge, Prince William, and his brother Prince Harry share some Indian ancestry via their mother, based on DNA analysis of distant cousins.
This in itself is not a particularly controversial revelation – if any individual went back to the level of their great-great-great-great-great-grandparents, it would not be a great surprise to find DNA sequences of different ethnic origin from that suggested by their own appearance. Moreover, to have a family member from another ethnic group or nationality is perfectly commonplace; the princes’ own paternal grandfather was born Prince Philip of Greece and Denmark.
What is noteworthy is the ethics of publishing details of this genetic analysis at all. One of the major ethical concerns about genetic information and privacy is that it can infer information about family members as well as the individual. Prince William’s cousins are perfectly entitled to pay for genealogical genetic analysis if that’s what interests them, but the decision to disclose information linked to a (presumably) non-consenting individual is highly questionable, as observed by Alex Hern in the New Statesman today.
Although the genetic and familial information conveyed by this particular analysis is trivial, it has been enthusiastically seized upon by the British and Indian press. Would this have been considered acceptable if the revelation were, say, that he might have inherited genetic variants associated with disease risk?
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. In fact, genetic information is for the large part much more innocuous than other forms of personal medical data. However, 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. Whilst the newspaper, DNA testing company (which was advertising a reduced price deal for Times subscribers) and experts involved did not violate any UK laws, their ethical position is highly questionable.
Dr Philippa Brice, PHG Foundation