The compensation awarded to the Havasupai Indians is a victory for an isolated ethnic tribe. Its impact on medical research is harder to discern at this early stage but could be devastating.
DNA is a waste product. We shed it all the time. It carries our personal information which can identify us but provided it is anonymised, no harm is done. If a scientist collects it and can do something useful with it, we should celebrate their achievement.
The trickier question is what happens when a scientist uses an individual's or – as in this case – a tribe's DNA to create something with commercial value. Scientists cannot patent DNA per se – it occurs naturally – but if they can add intellectual value to it, it may become a saleable property.
There is no evidence that this happened to the DNA supplied by the Havasupai Indians. Instead they feared that the information it yielded could damage their interests, for example by undermining their claim to their tribal lands. As a result they have won compensation on the basis that research was done on their DNA to which they did not consent.
Is it practical to require scientists to seek consent for research on DNA? The rules on consent to medical procedures were devised for situations involving physical risk, such as surgery, or trials of a new drug. Patients facing these risks must be informed about and have accepted them, before treatment can proceed.
Research on DNA would become unmanageably cumbersome if everyone who had given DNA had to have their wishes recorded. Moreover, it is in the nature of genetic research that progress often comes from studies that do not appear to bear directly on a particular disease.
The Havasupai Indians have been compensated for the hurt they have been caused by the way the research was conducted. But it is important that the outcome of this case does not inhibit future genetic research.
Although their own DNA did not yield insights into the causes and treatment of the Type 2 diabetes that has devastated their community, future studies may do so. The need is immense. Diabetes is rising around the world and poses a huge global health challenge. Doctors predict that from 170 million affected in 2000, the total will rise to 370 million by 2025, leading to an epidemic of amputations and blindness, the two commonest effects of the condition.Reuse content