Angelina Jolie shows us a glimpse of our future – if regulators let us have it

How do you regulate the future? We live in an age of miraculous, disruptive technologies, yet one of its great challenges is how to keep the lumbering process of regulation from putting the brakes on human inventiveness.

Take genetic testing: this week 23andMe, a pioneering US firm that offered to scan your genetic code for potential health threats for $99 (£60), was ordered to stop marketing its home testing kits by the FDA, America’s regulator of medicines.

Take a moment to consider how cheap those tests are. Sequencing the human genome for the first time in the 1990s took ten years and an estimated $3bn. 23andMe’s rapid turnaround and mass market price point shows just how far and fast this technology is becoming mainstream. Sequencing an individual’s whole genome remains much more expensive for now – firms are still racing to bring prices down to $1,000 per person – but there’s no obvious technical barrier that will prevent even the $99 genome from becoming a commercial reality.

The real question is whether governments will try to stand in the way.

It is possible to understand the regulator’s concern. Interpreting genetic tests remains a work in progress. At best the results point to predispositions and probabilities for future illness, rather than providing hard and fast predictions. Yet how can denying people the opportunity to make these hard calls for themselves be any sort of liberation?

Take Angelina Jolie. Thanks to capitalism’s ability to make today’s luxury tomorrow’s commodity, the lives of the rich and famous often show us a glimpse of our future. So it is with film star Jolie, who recently chose to undergo a double mastectomy based on genetic tests, which revealed she carried the BRCA1 mutation. Together with her family history, this result placed her risk of developing breast cancer at 87 per cent.

Not everyone would make the same calculations about elective surgery, or even whether to take the test in the first place. But it is hard to see how anyone could hope to justly make such decisions on Jolie’s behalf. Yet America’s FDA says the possibility a 23andMe customer might consider preventative surgery is a reason to keep these results from consenting adults.

When regulators want people to make less-informed decisions about their health, something has gone badly wrong. Precaution has mutated into a poisonous distrust toward the people it was designed to protect.

Like the accelerating speed of our computers, genetic analysis is on a train that’s pulling hard in just one direction. The result will be a better understanding of human health and more personalised medicine. In the process, existing institutions will be challenged, especially health insurers and medical providers. But denying they need to adjust will not make the transition easier. No doubt 23andMe also has its imperfections. But that means it needs more competitors, not fewer.

Our future contains amazing possibilities. But to get there we need to break past the gatekeepers who say “we’ll tell you what you need to know.”

First published: City A.M., 29/11/13

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Filed under Freedom, Innovation, Politics, Technology

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