Race, money and medicine

Setting research priorities fairly is a complex task.

Money and medicine
Photograph: Getty Images

It looks like a carrot. It smells and tastes like a carrot. After all, adding a single human gene to its cells is not going to make all that much difference. Unless, that is, you have Gaucher disease.

You probably don’t. The disease, which causes anaemia and bone and spleen disorders, affects fewer than one in 50,000 people, almost all of them descendants of Ashkenazi Jews from central and eastern Europe. But there are enough such people that Pfizer and an Israeli biotech company were persuaded it was worth developing Elelyso. This is where the carrot comes in: the drug is derived from a genetically engineered carrot. Its cells create an enzyme missing in sufferers.

On 1 May, Elelyso gained the approval of the US Food and Drug Administration (FDA). It is the first time the FDA has approved a drug created by genetically engineering a plant. This should be the first of many. While we fight shy of accepting genetically modified organisms in our food, we are quite sensibly welcoming them into our medicine cabinet. There is another controversy
here, though – race.

Ashkenazi Jews are not the first to benefit from racially targeted medicine. In 2005, the FDA licensed a drug called BiDil for treating heart disease in black patients. BiDil trials showed little efficacy in groups other than African Americans – but for them, it reduced mortality by 43 per cent. The research and the decision to grant the licence remain controversial, partly because the reason for BiDil’s efficacy in the black population is still unclear.

BiDil wasn’t developed specifically for African Americans. Yet with personal genetic information becoming ever more readily available, surely it makes sense to develop or genetically engineer more drugs that are targeted at specific groups with known genetic issues.

The trouble is, targeting small groups makes it much harder for the manufacturer to claw back the money spent on research. Such economic considerations matter a great deal when we contemplate the bright, shiny future of personalised medicine. The carrot drug was developed by Protalix, a biotech company based in Israel. To complete development, the firm worked with Pfizer, which will get 60 per cent of sales of the drug in the US.

Special treatment

A comparison of projected budget figures from the US National Institutes of Health (NIH) shows the potential for controversy. In the US, one in every 2,000 children born has sickle-cell anaemia. The disease, which predominantly affects black people, is the most common inherited blood disorder and wipes between 18 and 28 years off the average life expectancy.

The NIH’s projected spending on the disease next year is $65m. Multiple sclerosis affects more people but wipes fewer (five to ten) years off life expectancy. MS, which is twice as common among white Americans as African Americans, will receive $121m of research funding in 2013.

Setting research priorities fairly is a complex task. It’s not just about life expectancy; there are issues such as quality of life when living with a condition, for instance. But, in the era of racialised medicine, things could get ugly. Public research efforts try to be fairly balanced; private efforts don’t have to be. Some groups are richer and have better insurance. The economics of health care will tempt corporate medical research into prioritising the needs of the wealthy.

We know that work on an anti-malarial vaccine for people in the developing world is hindered by a lack of customers with the means to pay. It will be vital, as we put our emerging scientific abilities to work, for us to ensure that economic considerations don’t turn health care into even more of a political quagmire.

Michael Brooks’s “Free Radicals: the Secret Anarchy of Science” is published by Profile Books (£12.99)