Why I’ve Decided to Avoid US Genetic Testing

Ben Collier:

Hello everyone! I’ve been away for a while, but for a good reason. Last Friday, my wife gave birth to two beautiful boys. They’re asleep at the moment, and my wife has gone off to have a nap, the house is clean, so I’m clear to do some blogging.
Now, a few months ago, I was talking about having my genome sequenced by a US genetic-testing firm. They’ve got a great site, they seem to have loads of added-value features, and they’re reasonably priced, even once you factor in postage to the UK. The companies in this country seem pretty lacklustre, so although I normally like to support UK business, I thought I’d give this US company a chance. So then my boys were conceived, and supposed to be non-identical, but on Friday they were born, declared identical, and the placenta(s) were disposed of before our regular consultant had a chance to prove that this later diagnosis was wrong.
Enter the genetic tests. I needed to know whether they were mono- or di-zygotic. “Aha!” I thought, “genome sequencing will be perfect for this!”. But then I was struck with another thought. The image of Edward Snowden loomed into my mind, and I began to mull over the consequences of handing my children’s genome(s) to a US firm. Essentially, any information held on them by a US company could be passed over to the US government. The PRISM scheme, and laws associated with it, essentially allow all manner of information to be requested by US agencies, and the firm receiving the request are legally prevented from disclosing the fact the the request took place to the person whose data has been grabbed. How far this will stretch in future is unclear, and this applies to any US-based informatics firm. The same applies to any other genetics company for informatics organisation, of whatever sort.