Online DNA Testing – Solving mysteries and creating new problems?

DNA testing – should we care?

You may have seen The Lost King, a fascinating film about the discovery of Richard III’s remains in a car park in Leicester.  Mitochondrial DNA testing has confirmed that the DNA extracted from the bones matched that of Michael Ibsen, a Canadian cabinetmaker and direct descendant of Richard III’s sister, Anne of York.  Resolving these historical enigmas, Richard III, the Romanovs and the once but no longer ever-elusive Grand Duchess Anastacia, the Lost Valois Dauphin etc, once seemed beyond the realms of possibility. Modern science, hey?

The exhumation of Richard III is surely one of the most interesting events of our lifetimes – so hurrah for DNA testing? But the movie doesn’t cover what followed; scientists conducted DNA tests on five anonymous living donors who claim descent from the Plantagenet line and there was not a single match, revealed the prospect that an adulterous affair had somewhere broken the male line in the Plantagenet family tree.

Possibly a sex scandal across the centuries and fertile ground for a good old medieval bodice ripper? But it does give one pause to think how invasive these sorts of DNA tests actually are, particularly in the modern context where genetics testing companies, like Veritas Genetics, Ancestry and 23andMe, are providing consumers with an unprecedented level of access to their personal genome.

There are few things as private as sharing your DNA with these testing companies. And how many consumers actually take the time to drill down into the terms and conditions to find out who your DNA is being shared with and what they (and their affiliates and their affiliates’ affiliates) are going to do with it? Are these companies providing a consumer service, or building a database? Ultimately, do you care? Most of the time they de-identify the data anyway, don’t they? And it can’t be re-identified either, can it?

And who’s data is it anyway? If my Paternal Grandmother told me my family were French and Irish and my DNA test comes back telling me that my DNA is nothing of the sort and I’m actually half Scandinavian and half German … well, who’s privacy has been invaded? And by providing the DNA to the testing company, I’m providing them with the most personal information about my siblings and cousins, aunts and uncles. Have they consented? Should they have?

What happens if law enforcement show interest in accessing my DNA results to solve cases. FamilyTreeDNA has shared data with the FBI in the past. Data can also be shared with immigration authorities and other government entities that may use your (or your relative’s) data against you.  Is that something I’m OK with?

With the prospect of a Plantagenet scandal emerging 500 years after the likely-culprit has passed on, I know I’d like to have a say before my DNA is used for data analytics!

Food for thought.

Join our webinar

If you want to hear more about online DNA testing and some of the issues join our webinar on February 8th 2023. Dr Andelka Phillips,will introduce the world of personal genomics (also known as direct-to-consumer genetic testing or DTC) and some of the issues these services raise for privacy and consumer protection. She will talk about

  • The range of tests available
  • Some of the privacy and other risks  you should consider before purchasing
  • And suggestions for reform

This talk will draw upon the book Buying Your Self on the Internet: Wrap Contracts and Personal Genomics, published by Edinburgh University Press in July 2019 as the first volume in their Future Law series. You might also be interested in Dr Phillips’ recent Conversation piece:

Dr Andelka Phillips, Senior Lecturer in Law, Science and Technology, TC Beirne School of Law, University of Queensland and Research Affiliate, Centre for Health, Law and Emerging Technologies (HeLEX), University of Oxford.

Register now

To register and for more information follow this link.

Privacy, software design and technology. Ian is a privacy, IT and software contracts lawyer with over 30 years of experience as a lawyer and over 20 years of experience advising on the legal aspects of data management and processing.