Too Much Too Soon New Scientist Editotial 2 Nov 1996 3
WHO but a group of lawyers could present a draft international convention under the headline "Freedom of genomic expression"? Naturally, the convention is not designed to protect the rights of Casanovas, cancer cells or anything else with a genome gone out of control. Rather, it is an attempt to grapple with the implications of our greatly increased understanding of the human genome for the rights of humans (born and unborn) and to decide what should be legal and what should not (see p 8). The convention could affect us all. Once it has been polished, it wili go to the UN for adoption. All nations that ratify it will be expected to obey its terms. A team of lawyers from the International Bar Association has been working on it for more than four years. Unfortunately, like many documents produced by teams of international lawyers, the convention has ended up horribly open-ended. Many of its clauses could easily be interpreted by different people (or nations) in different ways. Take germ line "therapy"- changing the genome so that alterations are passed on to succeeding generations. This has always terrified people because it holds out the prospect of creating a master race of genetically engineered humans. The first clause of the convention appears to proscribe germ line therapy altogether, but the second clause would allow use where there is "indisputable"proof of its benefits. But what kind of benefits and undisputed by who? Another hot controversy has been over the rights of people from poor countries (particularly small indigenous groups) to profit from any special knowledge that might be erived from studying their unique genetic make-up. Some of those who drafted the convention think that it really can offer that protection. But they rely only on the interpretation of a single phrase, which stipulates that work on the human genome should be "for the benefit of all peoples". Hardly reassuring. Only on the issue of abortion does the convention seem to take a definite stand. Strangely, it would prohibit the termination of a pregnancy on genetic grounds if it were possible for the baby to be born alive. Can it really mean that an abortion would not be permitted even if it were known early in pregnancy that the baby carried a severe genetic defect? Surely this convention has set out to do too much and as a result done too little. Why even attempt such a Herculean project? Issues such as abortion or genetic disability, which are necessarily bound up with religions and cultural values, are best left to individual nations to sort out. Truly international issues, such as the exploitation of one group's genetic resources by another are where the UN should be taking a firm stand.
Gene Treaty Promises Rewards for Unique Peoples New Scientist 2 Nov 1996 8
REMOTE island populations and tribal peoples may be the surprise beneficiaries of a proposed global treaty to stamp out abuses of genetic knowledge. The draft International Convention on the Human Genome, unveiled last week in Berlin at the annual meeting of the International Bar Association (IBA), hints that tribal peoples should receive a share of the rewards if studies of their unusual genetics leads to lucrative commercial products. Researchers have already made great strides in understanding asthma, for example, by studying genes of the highly inbred population of Tristan da Cunha. One-third of the population of the tiny Atlantic island has asthma. The convention could give them a share in any money made from anti-asthma drugs developed with the help of studies of their genes.
"This is the first time that their right to receive commercial rewards from this type of research has been recognised," says Martine Rothblatt, who chairs the group of lawyers that drafted the convention. If the treaty comes into force, it may allay fears that biotechnology companies will be allowed to profit from genetic knowledge without having to compensate those who provided the source material. But the wording in the crucial sections of the draft remains vague. Rothblatt accepts that the text is open to wide interpretation. "It establishes the principle, but not the mechanics," she admits. The IBNs law and medicine subcommittee, which Rothblatt chairs, spent four years drawing up the document. She says that the major sticking point was the reluctance of rich countries to share their genetic technology with poorer nations. The treaty, drawn up at the request of the
Human Genome Organisation, an international alliance of geneticists unravelling the human genome, could be adopted by the UN as early as next summer. It aims to set minimum legal standards to prevent people everywhere from suffering discrimination because of the genes they inherit. Rothblatt points out that the convention would close loopholes in earlier treaties intended to prevent genocide and racial discrimination, which have opened up because of modern genetic techniques. "It would make the accomplishment of genocide through the application of genetic technology a crime," she says. Another sticking point during negotiations, she says, was the issue of abortion. Poorer countries generally favoured greater latitude to allow mothers to abort a fetus with a severe genetic abnormality. But the wording of the treaty seems to reflect pressure from the industrialised countries, notably the US, where the "pro-life" lobby is very powerful. Signatories would have to accept that "human genome information is not used except for bona fide medical reasons relating solely to the ability of the fetus to achieve a viable birth", which would seem to rule out abortion of fetuses with Down's syndrome, for example. The treaty proposes a ban on "germline" gene therapy, which alters the DNA in sperm or eggs to create a change that will be passed down the generations. However, it does leave the door slightly ajar for such techniques so long as "there is indisputable proof of the benefits and safety of such therapy". The treaty also allows inventions based on human genes to be patented. The draft lacks any safeguards against people being denied jobs or insurance purely on the basis of their genes. But it does rule out such discrimination where it would violate "human rights and ftindamental freedoms in the political, economic, social, cultural or any other field of public life". -