from the knowing-too-much dept
The cost of sequencing every DNA “letter” in a human genome has fallen faster than Moore’s Law, from around $100 million in 2001, to under $1,000 today (although some say the overall cost in a clinical context is higher). This brings with it the prospect of routinely carrying out full-genome sequencing for everyone. That’s precisely what Matt Hancock, the UK’s Health Secretary, has said he wants to see as a part of the country’s National Health Service (NHS), reported here by The Telegraph:
“My ambition is that eventually every child will be able to receive whole genome sequencing along with the heel prick test [a basic test for genetic conditions],” he told the conference.
“We will give every child the best possible start in life by ensuring they get the best possible medical care as soon as they enter the world. Predictive, preventative, personalised healthcare — that is the future of the NHS — and whole genome sequencing and genomics is going to play a huge part in that,” he said.
Creating a massive database of near-complete genomes will probably ring alarm bells for Techdirt readers. Just recently, US police have started obtaining warrants to search entire DNA databases, even of people who opted out of allowing law enforcement to access their genomic data. That’s despite the fact that “touch DNA” is mostly guesswork, and that crime lab testing is beset with problems. Moreover, a mistaken belief that DNA is infallible can lead to innocent people being charged with serious crimes like murder.
It’s true that DNA can be a very powerful tool for solving crimes by finding distant matches in publicly-available genetic data, and then constructing family trees to narrow down the possible suspects. But that fact also exposes why routinely obtaining someone’s DNA, as Hancock proposes for newborns in the UK, has an important impact on anyone related to the person whose whole genome is sequenced.
Even when DNA databases of a complete population are not set up for the purposes of mass surveillance, as Kuwait proposed (but then scaled back), and as China is implementing in Xinjiang as a way of controlling the local Uyghur population, there are other serious issues that need to be considered.
For example, the Telegraph article notes that full-genome sequencing of newborns means “parents could choose to be alerted to the fact their child faced heightened risks of specific diseases, and allow the NHS to offer more tailored treatment.” But would parents necessarily welcome knowing that their child is more likely than the average individual to develop some serious genetic condition at some point in their lives? And what about if that condition had no treatment at present? What is gained by knowing of the risk? Might parents, and later the affected children themselves, find that knowledge almost too much to bear — a genetic sword of Damocles hanging over them all their lives? Equally, parents might feel guilty if they don’t ask for this information, which could allow for earlier treatment of diseases.
There’s no doubt that full-genome sequencing will have a major impact on medicine in the decades to come, and offers the hope of more targeted and more effective medicines for many conditions. But for the benefits to be realized, doctors and genetic counselors will need to find effective ways to talk to people about what the detailed but probabilistic information revealed by their complete genomes will mean for their future health and treatments. Only then can we make informed decisions that enhance our well-being and happiness.