(Blog) $1.5 million cost for gene therapy

A recent news story tells how a family paid $1.5 million to have a gene therapy developed that would save their child afflicted by a very rare genetic disorder. Quite a number of parents have paid for new therapies because the researchers and drug companies are not financially motivated to produce therapies for just a handful of patients. Some of these parents, however, are finding that the drug companies are interested in paying the parents very large sums – multiples of the parents’ cost – for patents once the therapies have proven to be successful. Even though the price of the new therapies for additional patients will still be very high, sometimes over $1 million, the companies obviously think the demand and the lessons learned from research are worth the investment.

The therapies referred to here are somatic cell therapies – not the kind that will be performed on human embryos. Still, this gives us an idea of what to expect as new genetic engineering therapies are developed and commercialized for embryos.

A big ethical question pops up here: who really will benefit from embryonic genetic engineering? Wealthy people can pay for new therapies that will be used for all sorts of purposes, including enhancing cosmetic features and a wide variety of abilities (night vision is being successfully developed in mice). Unless the law strictly prohibits certain uses for genetic engineering, the sky is the limit for wealthy parents to produce super-children, at least in comparison to the rest of us.

If government gets involved in enforcing some sort of egalitarian policy in regard to genetic engineering, then we run the great risk of opening our political system to management of citizens’ characteristics according to the interests of the political majority, powerful elites, corporate interests in productivity, and military objectives – and, of course, ideological concepts of perfect equality or a fascist, organic society tied intimately to the state. These aren’t fantasies; they have happened in the 20th century, but the capability to achieve such goals will only be greater with genetic engineering.

We should not be alarmist or paralyzed with fear, but we should be proactive and prudent before things get out of hand.