Genes-R-Us

One of the more dramatic claims made by the media darling and UCL Professor of Genetics, Steve Jones, is that in the future genetic testing will be able to pinpoint the exact day of our death. A prediction of the far future perhaps, but the world has come a few steps closer to that future with the setting up of the Californian company, Medical Science Systems.

Medical Science Systems came into existence a few months ago with the mission of being, "exclusively dedicated to developing and selling predictive genetic tests". Such tests would be for particular genetic diseases; diseases contracted solely because of the genes we have inherited from our parents. With the help of companies like Medical Science Systems we can now find out if we have inherited such ‘disease genes’, for a fee of course.

It has long been possible to test an individual for the presence of particular genes and developing tests for specific disease-causing genes has been a logical progression. The use of such tests obviously throws up many moral and ethical problems. On an individual level, parents can test their unborn child for various genetic conditions and use the results to guide whether they wish to continue with the pregnancy. At a higher level, organisations may wish to test their work force or their customers for genetic conditions, hiring, firing or excluding according to the results. Because of such possibilities powerful committees have been set up to guide industry’s use of genetic testing and ‘genetic counsellors’ have been trained to advise individuals.

Medical Science Systems intends to sell predictive genetic tests for osteoporosis (a bone-weakening condition), coronary heart disease and diabetes-caused blindness. Despite the company’s confidence, it has it’s prospectus on the World Wide Web, there are many groups which have serious misgivings concerning commercial genetic testing. A group of academics, lawyers and doctors met at Stanford University in the US this October to discuss the issue. One of their conclusions was that, "the additional information that genetic testing provides must be balanced against the financial and psychological cost".

Medical Science Systems’ prospectus cites no scientific analysis of the risks or benefits arising from the tests and, alarmingly, offers no genetic counselling. Also, there has been no independent assessment of the medical credibility of the tests offered. None of Medical Science Systems’ employees even have a genetics degree! Dr Hans Goerl, of the journal Human Molecular Genetics describes the company’s actions as being "highly irresponsible".

The existence of a dubious gene testing company in far away California may not seem to be of much concern to us in the UK. Unfortunately, the organisation providing Medical Science Systems with its academic support is none other than our own Sheffield University. The relationship between Sheffield University and Medical Science Systems is highly intimate and very complicated. A legal agreement has been made giving Medical Science Systems considerable say in the University’s affairs. This agreement effects every member of the university’s faculty, staff and students. In the opinion of Dr Hans Goerl, "Sheffield has severely damaged its reputation for academic independence and its genetics department should be considered little more than a wholly owned subsidiary of this company".

It appears that profit-oriented biotechnology companies and ambitious universities will readily collude in selling genetic tests with little thought for the possible consequences. If this continues the practicalities of genetic testing will soon become as dogged by controversy as was the original concept. Perhaps widespread, commercial genetic testing itself will die long before Professor Steve Jones’s prediction has a chance to come true.

prospectus: http://www.sec.gov/Archives/edgar/ data/1037649/0000892569-97-002786.txt

Darren Nesbeth

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