Do Not Ask or Do Not Answer?

Rapid advances in genetic testing promise to transform medicine, but they may up-end the insurance business in the process.


From The Economist:

“If you can make a good soufflé, you can sequence DNA.” That assertion sounds preposterous, but Hugh Rienhoff should know. When his daughter was born about three years ago, she suffered from a mysterious disability that stunted her muscle development. After many frustrated visits to specialists, Dr Rienhoff, a clinical geneticist and former venture capitalist, decided to sequence a specific part of her genome himself. He discovered that her condition, which most resembled a rare genetic disorder known as Beals’s syndrome, was probably due to a new genetic mutation. “Without a lab and for just a few hundred dollars, you can contract or outsource almost all the steps,” he explains.

What a well-connected and highly motivated scientist in California can do today the rest of the world will be able to do tomorrow. Indeed, a number of firms are already offering tests for specific ailments (or predispositions to ailments) directly to the public, cutting out the medical middle-man. Dr Rienhoff, for his part, will soon launch, a not-for-profit venture intended to help others to unravel the mysteries of their family’s genes in the way that he unravelled those of his own.

The much-heralded genetics revolution thus appears, at last, to be arriving. As with every revolution it brings hope: rapid diagnosis of disease; treatments tailored to have maximum effect with minimum side-effect; even the possibility of prevention through early warnings of susceptibility. However, as with every revolution, there is fear as well. That fear is focused mainly on the question of what has come to be known as genetic privacy.

More here.  [Thanks to Saifedean Ammous.]