issue 217 - March 1991
Improving the human race
A three-billion-dollar project to map human genes has been launched.
Some anticipate that it will herald an era in which all diseases
and medical frailties will be revealed, identified and banished.
Jack Doyle finds this rhetoric chillingly familiar.
A little knowledge is a dangerous thing, especially when it is about the genetic composition of human beings. But a little is all we have. And on the basis of it much medical biotechnology assumes that who we are and what we are is determined by our genetic make-up. Genes are destiny. Therefore knowing genes – all 100,000 of them – is knowing us.
To know genes one must find them, which is the aim of one of the biggest bio-science projects in history: the Human Genome Initiative. This three-billion-dollar, 15-year odyssey, recently approved by the US Congress, aims to map and detail the bio-chemical ‘blueprint’ of humankind. Having done this, modern science will then have its ‘holy grail’, as one researcher put it, the roadmap to begin administering a Golden Age of Biomedicine, an era in which all diseases and medical frailties could be revealed and banished from the face of the earth. And perhaps much more as well.
Critics of the Human Genome Initiative fear that it will facilitate a new kind of eugenics and social discrimination. This is already happening, and will become more common as diagnostic testing, genetic screening and the use of new DNA-based identification systems become more widespread. Consider the following examples reported in the US:
. A health insurance company refused to insure a two-year-old boy diagnosed as having the gene for polycystic kidney disease. The condition – which damages the kidneys – does not cause health problems until adulthood and then can progress quite slowly.
. A doctor told a couple that their health plan would be cancelled unless the woman terminated her pregnancy because genetic testing had revealed her unborn child had cystic fibrosis. The insurance company backed down after a lawsuit was threatened.
. A patient diagnosed as carrying a gene for Gaucher’s disease was denied a government job even though the patient wasn’t expected to get sick.
. A couple’s application to adopt a child was denied because one spouse had a family history of Huntingdon’s disease and was thought to risk developing the inherited disorder.
These cases may only represent the tip of the iceberg. Equally worrying is the possibility that employers and government officials may resort to widespread genetic screening of workers, criminals, government employees or the general public. All this is likely, critics say, because more and more genetic information – whether accurate or not – is becoming available.
Nevertheless enthusiasm for projects like the Human Genome Initiative is unbounded in some quarters. ‘It’s going to tell us everything,’ says George Cahill, vice president of the Howard Hughes Medical Institute. ‘Evolution, disease, everything will be based on what’s in that magnificent tape called DNA.’ The prestigious National Academy of Sciences has thrown $200 million-a- year funding at the project for the next 15 years. And a range of commercial interests have lined up behind it, each with their own specific goal in view.
Computer manufacturers anticipate the development of all kinds of computers while drug companies envision a cornucopia of new drugs. Companies providing gene therapy also stand to gain – several have been formed precisely with such sales in mind.
And the diagnostics industry will benefit enormously from predictive testing kits. Twelve million Americans are thought to carry the genes for cystic fibrosis and the industry guesses that millions of people will want to know whether they have that gene. Some US geneticists have even suggested a nationwide cystic-fibrosis-screening programme of all people of reproductive age, which would pull in an estimated $200 million to one billion dollars.
The avalanche of new diagnostic testing will have major social repercussions. Genetic and prenatal testing now available is already being used disproportionately by the rich and educated, sowing the seeds for a new kind of bio-social stratification. And some diagnostic firms are pressing hard on the limits of ethical practice in order to open profitable new markets.
Last year, for example, just before an article appeared in the New England Journal of Medicine confirming the ability to diagnose the cystic fibrosis gene, several commercial laboratories wrote to doctors urging them to send samples of the patients’ blood for testing. This was despite a formal statement by the US Society of Human Genetics declaring it inappropriate to offer the test to people without a history of cystic fibrosis.
Today in the US very few effective legal restrictions prevent employers from performing medical tests on job applicants – or control the way test results are used. One blood sample might reveal considerable information about an individual’s health or genetic vulnerabilities and predispositions, but US employers are not required to give a reason for refusing to hire a particular applicant.
Genetic information is being compiled at a furious pace in public and private research laboratories world-wide. Much of it is stored in sophisticated retrieval systems, available to a wide network of users. Increasing amounts of genetic information from hospitals, universities, companies and other sources will be lodged in these data banks. It could easily be co-ordinated and centralized under the rubric of research.
One author1 has already proposed correlating each person’s health records, psychiatric records, and scores on personality and intelligence tests. A powerful computer might turn up all sorts of suggestive relationships between genes and traits which further study could then validate. This information – names, addresses and all – might well get into the hands of diagnostic firms, drug companies, food companies and other commercial interests.
A multinational company could use the new information much like conventional businesses now use census data to project consumer preferences and life-style changes in order to prepare product lines. Knowing when certain diseases attack a certain section of the population would enable companies to provide a cradle-to-grave picture of what to sell and when to sell it, whether a home diagnostic kit, a drug or gene therapy. The possibilities are endless.
DNA-identification systems are now being used in certain legal proceedings – like the controversial ‘DNA fingerprinting’ whereby blood samples or even a hair follicle give a unique personal signature. Laws requiring mandatory ‘DNA typing’ of certain people – usually sex offenders – and the creation of central facilities for storing the results have been adopted in the US by the States of Virginia, Washington and Arizona. In May 1989, the State of Maryland enacted a law that allows the identity of any party in any legal proceedings to be proved or disproved by evidence of DNA profile.
Finally, there is eugenics, which the dictionary defines as ‘the science of improving the qualities of the human race’, but which history has coloured more darkly. In the 19th century, new discoveries in the fields of evolution and heredity spawned a pseudo-science whose leaders professed that undesirable traits should be purged from the human gene-pool while desirable ones should be propagated. Eugenics fuelled the Third Reich of Adolph Hitler, who bred Germans for a master race while exterminating millions of Jews under the guise of promoting racial purity.
Eugenics thinking has recurred in recent times. According to one account1:
‘Francis HC Crick, soon after receiving the Nobel Prize (for his discovery of the DNA’s double helix structure) … discussed eugenics and genetics at a symposium of biological scientists. He toyed with the idea that the Government might use food additives to control fertility. Then licences granting the right to bear children could be issued to worthy citizens. The British geneticist explained: “I do not see why people should have the right to have children … if one did have a licensing scheme the first child might be admitted on rather easy terms. If the parents were genetically unfavourable, they might be allowed to have only one child…”’2
Today some critics fear that modern science and projects like the Human Genome Initiative may serve the purposes of eugenicists. Salvador Luria, a respected biologist, wrote to Science Magazine in 1989: ‘Will the Nazi program to eradicate Jewish or otherwise ‘inferior’ genes by mass murder be transformed into a kinder, gentler program to ‘perfect’ human individuals by ‘correcting’ their genomes in conformity perhaps to an ideal ‘white, Judeo-Christian, economically successful’ genotype?’
Given all the unpleasant side effects and unwelcome socio-economic trends that the Human Genome Initiative and like activities are certain to release in coming years, there is every reason to call for a moratorium on the project until certain legislated safeguards can be established. Public funds have no business laying the groundwork for genetic discrimination, or for creating a handy catalogue for the next eugenics demagogue who comes along. New civil rights and privacy laws are needed – fast.
Jack Doyle, author of Altered Harvest (Viking-Penguin), is senior analyst for Technology and Corporate Policy with Friends of the Earth in Washington DC.
1 Robert Right New Republic (July 1990)
2 Reported by Leon J Kamin, Professor of Psychology at Princetown University and co-author of Not in Our Genes.
WHAT YOU CAN DO
. Demand that all biotechnology research is available for public scrutiny – especially that related to the release of genetically engineered organisms into the environment.
. Insist on tough controls over the release of genetically engineered organisms, both nationally and internationally.
. Lobby your Government for a moratorium on the Human Genome Project until there has been open and informed public debate on the issue.
. Campaign for a ban on the patenting of life forms at least until there has been proper public debate.
. Insist that all foods which have been genetically engineered are ‘tagged’ to identify them. That way you can choose whether or not to buy them.
. Press for public representation on all committees that monitor developments in biotechnology. A Public Biotechnology Commission should be set up to advise government ministers.
. Insist that companies are held liable for any damage their products cause.
. Demand funding for more government research into environmentally sustainable applications of biotechnology which would help the Third World.
AOTEAROA (New Zealand): Greenpeace, Private Bag, Wellesley Street, Auckland.
AUSTRALIA: Australian Conservation Foundation, 340 Gore Street, Fitzroy, Victoria 3065.
CANADA: Rural Advancement Fund International, PO Box 188, Brandon Manitoba R7A 5Y8 Canada. Canadian Council for International Co-operation (CCIC), 1 Nicholas Street, Suite 300, Ottowa, Ontario KIN 7B7. Science for Peace, University College, University of Toronto, Toronto, Ontario MSS 1A1. Heritage Seed Programme, RR3, Uxbridge, Ontario LOC 1KD.
UK: The Genetics Forum, 258 Pentonville Road, London N1 9JY. Norfolk Education and Action for Development, 38 Exchange Street, Norwich, NR2 1AX. Bio-Information International Ltd, 25 Northlands Street, Camberwell, London SE5 9PL. Compassion in World Farming, 20 Lavant Street, Petersfield, Hampshire GU32 3EW. Greenpeace, Greenpeace House, Canonbury Villas, London N1 2PN. Parents for Safe Food, Britannia House, 1-11 Glenthorne Road, Hammersmith, London W6 OLF. Finnrage, Box 38 LOP, 52 Call Lane, Leeds, LS1 6DT.
US: Committee for Responsible Genetics, 186A South Street, Boston, MA 02 111. Union of Concerned Scientists, 26 Church Street, Cambridge MA 02238. Rural Advancement Fund International, PO Box 655, Pittsboro, North Carolina 27312. Economic Trends, 1130, 17th Street, NW, Suite 630, Washington DC 20036.
INTERNATIONAL: Genetic Resources Action International, Apartado 23398, E-08080, Barcelona, Spain. Rural Advancement Fund International, Wipplinger Str 32, A-1010 Vienna, Austria. African Centre for Technology Studies, PO Box 69313, Nairobi, Kenya. Dag Hammarskjold Foundation, Dag Hammerskjold Centre, Ovre Slottsgatan 2, S-752 20 Uppsala, Sweden.
Worth reading on … BIOTECHNOLOGY
The Laws of Life, Development Dialogue 1-2, (Dag Hammarskjold Foundation, Uppsala, 1988). The Bio-Revolution Conucopia or Pandora’s Box? (eds) Peter Wheale and Ruth McNally, (Pluto Press, 1990). The Gene Hunters Biotechnology and the Scramble for Seeds, Calestous Juma, (Zed Books Ltd, 1989). Genetic Engineering Catastrophe or Utopia? (eds) Peter Wheale and Ruth McNally (Harvester – Wheatsheaf 1988). Miracle or Menace? Biotechnology and the Third World, Robert Walgate, (Panos Institute, 1990). The Baby Machine (ed) Jocelynne A Scutt (Green Print 1990). Genethics – The Ethics of Engineering Life, David Suzuki and Peter Knudtson, (Unwin Paperbacks, 1990).