for the human genome
What links Elvis Presley, Marilyn Monroe and Abraham Lincoln? Well, a US company wants to sell their DNA. Mark Honigsbaum reports
Earlier this year StarGene, a San Francisco- based biotechnology company, hit on a novel marketing idea. Using the latest DNA cloning techniques it would duplicate samples of DNA taken from the hair of deceased celebrities, enclose them in transparent plastic and attach them to “appropriate” trinkets. There would be Marilyn Monroe “earrings”, Abraham Lincoln “pens” and Elvis Presley “belt buckles”.
If ever there were a product designed to catch the zeitgeist, this seemed to be it. The famed double helix has come a long way since Jim Watson and Francis Crick cracked its structure 44 years ago. From mail-order screening tests for breast cancer and cystic fibrosis to DNA fingerprinting of a whole Breton village last week in the hunt for the killer of a Cornish teenager, DNA is no longer simply the stuff of life. It is fast becoming a ubiquitous factor in our daily lives too.
We eat genetically-engineered apples and potatoes and United States farmers are sowing the seeds of genetically altered cotton, corn and soya beans; biotechnology companies are developing a new generation of drugs and therapies aimed at curing everything from cystic fibrosis to the 15 most common cancers.
Yet for all the benefits promised by the dawning of the new “century of biology”, there is still a widespread feeling that DNA ought not to be tampered with and is somehow inviolable.
When, for instance, StarGene approached Presley’s estate for permission to copy his DNA, the trustees refused, arguing that it could lead to a glut of paternity suits against the dead singer and that, besides, they considered the proposal “distasteful”. The trustees of Monroe’s estate refused on similar grounds. The reaction “surprised” StarGene’s marketing director, Carole Zimmerman: “Basically, it was seen as invasion of privacy,” she says. “But what people don’t seem to understand is that the duplication of DNA is really no different from the duplication of a photograph or someone’s fingerprint. In that sense, it’s public property.”
David King, editor of Genethics News, a magazine specialising in ethical issues raised by genetic research, agrees. Although it is theoretically possible that someone could identify Elvis’s offspring from a fragment of his DNA, copying somebody’s DNA is hardly a burning ethical issue. “There is nothing holy about a fragment of someone’s DNA. It doesn’t contain the essence of that individual,” says King.
King points out that scientists at the Wellcome Trust Genome Campus in Cambridgeshire are already mapping the DNA sequences of the human genome with the aim of decoding all 100 000 genes governing human growth and function by the year 2005. Much of it has already been published on the Internet as part of an internationally agreed policy of making information about human DNA public property. The idea is that any research establishment wishing to develop new drugs and gene therapies can then access that information freely, without having to pay expensive licensing fees.
But the genome-mapping project raises profound ethical questions. It could, for instance, lead to doctors being able to draw up genetic “blueprints” for every patient in their care. Armed with these blueprints, doctors would be in a position to tell people their chances of living to a ripe old age or of succumbing to a genetic predisposition to illness. They might also be able to predict a foetus’s propensity to violence, crime and, possibly, homosexuality too.
“The fear is that the advances being made by scientists are running ahead of our ability to deal with the ethical consequences,” says King. “There is a new world out there and we are unsure how to react.”
One person familiar with this ambivalence about genetics is Dr Maurice Super, a consultant clinical geneticist at the Royal Manchester Children’s Hospital. Last February, Super opened an information kiosk at Manchester Airport called the Gene Shop, with the aim of cutting through the hype surrounding biotech and educating people about the benefits of the new technologies. Sandwiched between the Body Shop and the airport’s prayer room, Super’s shop (motto: “What keeps body and soul together? Your genes”) features interactive displays explaining how genes for conditions such as haemophilia and Marfan syndrome – a rare condition that can lead to heart problems – are passed down the generations, and how new drugs and gene therapies might treat them in future. He also explains where people can go for screening and counselling if they are worried about having a genetic predisposition to these ailments.
“The aim is to decrease the fear of a brave new world and encourage people to be more proactive about their health,” says Super. “A lot of the time when I diagnose and counsel people at my clinic I see how interested they are but I am educating people in a captive position. I have always thought it important to talk to people before they are my patients.”
So far 7 000 people have visited the Gene Shop. But while Super says the response is encouraging, many people remain fearful of the possible consequences of gene testing. Earlier this year, for instance, it was widely reported that insurance companies were planning to use information from genetic tests to calculate people’s eligibility and premiums for life insurance.
Thus, people with a predisposition to heart disease could expect to pay more for life insurance than those with a cleaner genetic bill of health. And there are psychological consequences too: some people might respond positively to learning that they have a “50%” chance of developing breast cancer, but what about those who find the news depressing and treat the genetic diagnosis as a death sentence? More worrying still is the issue of who will control the new biotechnology and how much it will cost. Already, biotech companies are rushing to patent newly sequenced strands of human DNA in the hope that they will turn out to specify genes that are important in disease.
Although religious and environmental groups object that human, animal and plant DNA is a part of nature and ought to belong to everyone, thousands of patents have already been granted. The vast majority have been registered by American and Japanese companies such as Genetech, Immunex and Takeda, with European pharmaceutical concerns such as Hoffman La-Roche coming a poor third.
So far few of the patents have been tested in the courts. But the worry is that biotech companies will increasingly insist on patenting before agreeing to share their research discoveries and fund the development of new therapies and drugs. This in turn could lead to the neglect of non- lucrative lines of research and inflated health costs as companies try to exploit demand for the gene technology over which they hold a particular monopoly.
The Manchester Regional Genetics Centre, for instance, recently received a bill from a Toronto-based biotech company demanding a $5 000 licence fee, plus a royalty of $4 each time it used its patented cystic fibrosis gene-screening test. Similarly, the American company which discovered the BRCA1 breast cancer gene also charges for tests using its diagnostic kit. And although it has generously waived its “right” to charge for research into a cure, it is now trying to patent the second breast cancer gene, even though the initial DNA sequencing for BRCA2 was published three years ago by the Sanger Centre.
“What we are seeing is a gold rush for the human genome,” argues King. “In my view it is an attempt to privatise nature and an abuse of the patent system. I’m not against patenting, I just think it should only be permitted further up the line.”
The problem is there is no consensus on where the line should be drawn. In July the European Parliament voted to harmonise Europe’s rag-bag national patent laws by allowing continent-wide patents on so-called genetic “inventions”. According to John Battle, the United Kingdom’s science and energy minister, this means that human gene sequences and animal and plant DNA that occur in nature are not patentable. However, British religious leaders such as the Rt Rev Richard Harries, the Bishop of Oxford, and Jonathan Sacks, the Chief Rabbi, fear that the European directive is unclear and that clever patent lawyers will try to say that once a particular strand of DNA has been isolated in a test tube it becomes a scientific invention.
In a letter to Battle in July they argued: “If this directive were passed, merely extracting and describing a gene would entitle a company to patency, allowing them not only a monopoly control over the procedure but over the genes themselves, thus crediting them with all future unforeseen developments and applications of that basic discovery.”
This – not cloning – is the real brave new world: the reduction of human beings to so many “spare parts” for exploitation by, and the enrichment of, the biotech industry.
At the moment, the application of cloning techniques to human embryos is considered ethically unacceptable. But as Super points out, the technology is developing so fast and the possible benefits are so great that our objections might soon be overridden. For instance, there are a number of inherited genetic conditions, such as Laber’s blindness – a condition passed on via faulty female chromosomes – which could be eradicated by cloning techniques.
“There are certain families whom you could help a great deal using cloning, without significantly altering their overall genetic makeup,” argues Super. “The problem is that right now we don’t know what the side effects might be. But as we begin to show that these things are possible in the lab, our attitudes may change.”
In fact, they already have. Who, for instance, would have thought 10 years ago that advances in reproductive technology would mean that a child could have up to five parents: a sperm donor, an egg donor, a surrogate mother and two adoptive parents? Now such variations are commonplace we no longer consider them unacceptable or even unusual.
As Crick, who won a Nobel prize for his work on DNA, told a US congressional committee last year: “We used to think that our fate was in our stars. Now we know that, in large measure, our fate is in our genes”.