Our genes in their hands : OPINION
Tuesday 07 February 1995
The benefits will be greater understanding of heredity and human development. Health will also benefit, for many diseases, from diabetes to cancer, have a genetic component.
That means there is money to be made from human genes. Any pharmaceutical company that can corner the market in, say, cancer-causing genes - by patenting them - will enjoy assured profits for years to come. Tomorrow, the House of Commons Select Committeeon Science and Technology will take evidence on the patenting of human genes, as part of its parliamentary investigation into the "new" science of human genetics.
Two years ago the Nuffield Council on Bioethics published a report calling for government regulation of genetic testing and screening. Nothing has been done. The council also called for the insurance industry not to pry into the results of people's genetic tests. Last month, the Association of British Insurers (ABI) told the Select Committee it wants to see all results.
The committee gave the association a bipartisan hard time. A Conservative MP, Spencer Batiste, said it might improve public health if the population were screened, so that individuals would know their risk of developing disease or of having children who might suffer inherited conditions. But people would be discouraged from participating in such screening programmes if they knew the results, recorded on their medical records, would affect their chances of getting life or other insurance cover.
Professor Peter Harper, of University College Cardiff, told the committee he already knew of people who had been tested to see if they carried the gene for Huntington's Chorea (an inherited degenerative brain disease) and who did not want the results transmitted to their GPs because it might prejudice their chances of getting insurance. In Professor Harper's view, the industry was mistaken in regarding the results of genetic tests as part of someone's medical record. If someone who is currently healthy had a genetic test indicating the potential of disease in the future, that information did not alter the fact that the person was healthy now and so should not be entered on his or her medical record.
But Roger Bowley said the ABI opposed legislation that would stop insurers gaining access to the results of genetic tests, even though the committee pointed out no insurance company would be at a disadvantage against its rivals if the law denied access to the information to all companies.
Representatives of families affected by genetic disease are also concerned about genetic discrimination by the insurance industry. Alastair Kent, director of the Genetic Interest Group (GIG), called for proper regulation of the new genetics. But, he warned, it had to be open and transparent and consult interested parties, not be just a committee of the great and good sitting in secrecy.
Mr Kent opposed the trend towards the patenting of human genes: on ethical grounds, as it is intrinsically wrong for a third person to have a patent on something that is part of a person. But GIG is also against patenting on practical grounds. Someone with a headache, Mr Kent pointed out, can buy aspirin, and the existence of a market for headache remedies might stimulate innovation leading to the invention of paracetamol. But if a gene is patented, there is no way an inventor can go beyond the gene itself. A patent on a gene is on product and outcome: "If you own the gene, you have a unique monopoly," he said.
The committee has yet to hear the full evidence. One of the world's biggest pharmaceutical companies, Merck Sharp and Dohme, says it will publish the details of the gene sequences its researchers isolate, thus preventing anyone from claiming patent rights.
SmithKline Beecham, however, has gone into partnership with gene-hunting biotechnology companies, and specifically intends to patent as much as it can. The British company Zeneca believes that "genes are not different from any other area of technology",according to Peter Kolker, the company's intellectual property manager.
"There would not be a pharmaceutical industry if it were not for patents," Mr Kolker continued. "The treatments that are going to come out of gene technology will be beneficial. To deny patenting of sequences would deny that benefit to mankind."
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