It sounds like science fiction: genetically-based medicine offering drugs that work best for you because they perfectly suit your racial profile. Two years ago, the US Food and Drug Administration (FDA) approved the first “ethnic” drug specifically for one racial group.

Called BiDil, it was shown to increase survival among African-Americans with advanced heart disease. It was hailed as a leap into a new era of “pharmacogenomics”, in which drugs would work more effectively because they were tailored to your genetic profile.

Then an Icelandic company called Decode said it had detected a version of a gene that significantly raises the risk of heart attack in African-Americans. The company reported in Nature Genetics that the 6 per cent of African-Americans with the variant gene were 3.5 times as likely to suffer a heart attack, and said that the gene could be suppressed by specifically targeted drugs.

On the face of it, these are exciting developments. But now, in the week that the genetic pioneer James Watson caused uproar by saying that people of African origin were not as intelligent as Caucasians, serious questions are being raised about whether racially targeted medicine offers more hype than hope. Experts gathering for a big genomics conference hosted by the Economic & Social Research Council (ESRC) in London next week are keen to prescribe a salty dose of realism with our highly sugared genetic meds.

Sickle cell anaemia as a “black disease”

Race-based medicine revolves around the assumption that racial groups are likely to have common genetic characteristics, and some of these genetic commonalities will also bring some common susceptibility to certain diseases.

The most well-known example is sickle cell anaemia, an inherited blood disorder. It is caused by a defect in the gene that makes haemoglobin (a component of red blood cells), making it defective and poor at carrying oxygen.

Since it was identified in 1910 the disorder has been characterised as a “black disease” because the genetic characteristic causing the disease (which also provides some protection against malaria) is common in black populations. Similarly, high rates of prostate disease in Afro-Caribbean men have prompted researchers to investigate cancer genes for this group.

New excitement about the potential of easy genetic testing techniques has, as a result, caused an explosion of interest in racially targeted medicine, and its potential for screening and treating those most vulnerable.

A recent report in Forbes magazine predicted that we will soon have home kits “as simple and cheap as a pregnancy-test dipstick” for genes for stress, pleasure, irritability, aggression, suicide, alcoholism and sexual proclivities.

But some scientists suggest that testing your genetic profile on the basis of race may not only be flawed but also unethical. Take sickle cell. It is also common in people of Greek, Italian, Indian and Latin American ancestry and academics such as the anthropologist Melbourne Tapper, from the University of Texas, believe that our perceptions of the disease as “racial” have been driven by notions such as genetic purity and superiority.

And Dr Troy Duster, a former president of the American Sociological Association, has urged geneticists to slow down in their search for links between genes, disease and race in a book called Backdoor to Eugenics.

Fear of gene-testing’s darker aspects led the US House of Representatives to pass a law banning employers and insurers from discriminating against people on the basis of genetic tests.

The whole field may be based on a misconception. Genetically speaking, nothing differentiates one race from another. There is no African gene, no Causasian gene, no Asian gene. Genetic differences exist, and these get passed on to offspring, but generally the differences don’t occur neatly along neat racial lines. Human beings share 99.99 per cent of their genetic make-up, regardless of race, and the variants that occur in the remaining 0.01 per cent of the genome are seen across all ethnic populations.

Ethnic populations are genetically variable

Angus Clarke, a professor of medical genetics at Cardiff University, who will address the ESRC conference, says there are problems with the basic effectiveness of identifying treatments for people on the basis of their race. “Using people’s ethnic background should be getting less and less important,” he says. “You are merely talking about probabilities; that if someone is from population X, they are more or less likely to have that gene variation. But populations are so variable and the way people label themselves ethnically is so varied that the amount of information you get is pretty poor.”

Indeed, a Columbia University study in the American Journal of Public Healthlast year concluded that even among Ashkenazi Jews, a group normally considered genetically discrete, there was no point seeking specific racial genes for breast cancer because the Ashkenazis had bred with people from other ethnic groups. The problem is magnified many times among African-Americans, a self-identifying population with a rainbow of genetic backgrounds. So how come we have the African-American-only heart drug BiDil? The drug, and the way it was tested, are not quite as they initially seem.

Although the clinical trial for it showed significant results in African-American patients, its many critics point out that this doesn’t mean much because it was tested only on black patients. The FDA’s approval of BiDil was based on a clinical trial that enrolled only self-identified African-Americans and did not compare their health outcomes with those of other ethnic or racial groups. Nor is BiDil a true “pharmacogenomic” drug. It is a pill that combines two generic drugs that dilate blood vessels, and both have been used for more than a decade to treat heart failure in people of all races.

Critics, including Professor Clarke, say that BiDil’s approval as a “racial” drug has more to do with marketing skill than genes.

“The FDA decision is incredibly controversial. Health professionals have been quite unhappy with it, and it’s seen as collusion between drug licensers and drug companies,” he says. “I don’t think that opposition to BiDil is going to wither away.”

Meanwhile, the current ability of genetic testing to tell you much that is useful for your health has also been questioned. Paula Saukko, a sociologist who has worked for the ESRC’s centre for genomics in society, has studied companies selling genetic-testing products direct to consumers in Europe via the internet. He says the online sellers often wriggle between legal definitions to avoid regulatory trouble.

“They want their genetic-testing products to sound special or miraculous but, at the same time, they don’t want to be caught red-handed making outrageous claims,” she says. “They tend to skirt around the issue of what their tests might identify – whether it’s a genuine genetic predisposition or just some kind of ‘susceptibility’. So they may point to a ‘gene for heart disease’ or a ‘gene for cancer’, though the association is very small and the clinical tests supporting the link have not been replicated.”

What we really need are cheap and accurate genetic-testing techniques to profile your susceptibility to disease, and what drugs will suit you best, as an individual, not as a race. With no such test on the horizon, the worry is that the marketing men will spread a misleading and potentially dangerous idea of what genetics really means.

GLOBAL MORTALITY

The leading causes of death in countries across the globe, according to the World Health Organisation database:

China Stroke

Dominican Republic HIV/Aids

Ethiopia Respiratory disease, such as asthma or chronic obstructive pulmonary disease

France Heart disease

Germany Heart disease

Iran Heart disease

Iraq Respiratory disease

Israel Heart disease

Japan Stroke

Kenya HIV/Aids

Mongolia Stroke

Peru Heart disease

Russia Heart disease

South Africa HIV/Aids

Switzerland Heart disease

Thailand HIV/Aids

UK Heart disease

US Heart disease

Zimbabwe HIV/Aids

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