In my view
Patent first, patient last
By Paul McGarr
GENE THERAPY is one of the most hyped "scientific breakthroughs" in recent times. The promise was that it would cure people of killer diseases. But the death of a US teenager last September, in a case whose details have only now emerged, has thrown such talk into crisis.
Joel Gelsinger died after gene therapy which was supposed to cure his liver disease. The case undermines the simplistic and unscientific notions which underpin much debate around genetics. It also exposes how big business distorts genuine scientific research.
Research into gene therapy and genetics is given huge sums of money. The Human Genome Project is costing billions. It promised to map all human genes. Scientists would then be able to replace disease- causing genes with others-gene therapy. The notion is that you can identify a gene responsible for some illness and simply replace it, like a part in car.
As anyone who has ever tried to fix a car knows, life is not always so simple. Genes are not car parts but part of much more complex biology which involves other genes, processes in biological cells and the wider environment. Changing one bit can have all sorts of unexpected and complex results.
In Joel Gelsinger's case his body reacted in an unpredicted way to the treatment and he quickly died. The case is not only a tragedy for Joel and his family, but underlines the limitations of the mechanical view of genes. It should boost the alternative approach argued for by scientists such as Steven Rose here in Britain and Richard Lewontin in the US.
They argue that genes are one important part of our complex biology. They insist that genes do not operate in a simple, mechanical way, and that a full understanding of the relationships of genes with the rest of our biology is the key to a proper understanding.
As details of the Gelsinger case have emerged so has another, sinister, aspect. The researchers involved did not tell official regulatory bodies about several earlier cases where patients reacted badly to treatment. Had they done so, Joel's treatment would have been halted.
The consent form signed by Joel also omitted any mention that monkeys used in earlier experiments had died-a fact which was on the consent form shown to official regulators. The researchers also admitted they continued with Joel's treatment despite his liver condition being weaker than official rules allow for treatment to go ahead.
Behind all this hangs the whiff of profit. The key researcher involved had a financial stake in a company which stood to make money from any cure developed. The US Washington Post argued this month that the whole area of gene therapy is "under pressure from corporate sponsors. More than ever," the paper argues, genetic research is "dominated by profit-seeking companies".
And, "in a related development, scientists who once shared their results openly" are now "more secretive under the competitive pressure to develop the first blockbuster therapy. Increasingly talk is of patents rather than patients."
We can only hope that Joel Gelsinger's tragic death provokes a broader questioning of a society in which genuine knowledge is sacrificed in the rush to profit from disease.