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Important Changes in UK Law on Reproductive and Genetic Technologies

by David KingGenetic Crossroads
January 26th, 2007

David King
David King

Editor's note:

Many consider the UK approach to human biotechnologies to be a model of comprehensive and responsible policy. Since its creation in 1990, a government agency called the Human Fertilisation and Embryology Authority (HFEA) has set and enforced regulations for assisted reproductive technology and research involving human embryos. Observers often contrast this situation to the "Wild West" in the United States, where regulation and public oversight of these technologies are minimal.

Here, Dr. David King gives his views on government proposals that would reorganize the HFEA and set important new rules. King is a former molecular biologist and director of Human Genetics Alert, an independent watchdog group based in London.

By David King, PhD

In December, the UK government published a set of proposals that would reform the Human Fertilization and Embryology Act. The legislation dates from 1990; in recent years scientific developments and changes in social attitudes have made it increasingly outdated.

The government's proposals follow a public consultation on the law in 2005, and precede publication later this year of draft legislation, which will be scrutinized by parliamentary committees before coming to a vote. The proposals include merging the HFEA and the Human Tissue Authority, which regulates non-reproductive human tissues, into a new Regulatory Authority on Tissues and Embryos. In addition, they include important new rulings on a number of genetic and reproductive technologies.

Increased access to assisted reproduction

Most of the headlines about the proposed changes have focused on the government's intention to make it easier for single women and lesbian couples to access IVF. The 1990 law requires doctors to consider the welfare of any child born through IVF, "including the need for a [social] father." The government has decided to remove this phrase, since it believes that social attitudes have changed, and because this constraint is not imposed in natural reproduction.

Social sex selection disallowed

Another unambiguously good decision is for a ban on social sex selection. Until now, the HFEA's refusal to allow sex selection was a matter of agency policy, and contained a serious loophole: it did not apply to sperm-sorting technologies. The proposed ban will include sex selection for so-called family balancing, despite a recommendation by the Parliamentary Science and Technology Committee that this be exempted.

The proposal cites the strength of public opposition to social sex selection, as well as concern about the possible effects of allowing sex selection in the UK on countries where there is a clear preference for male children.

Inheritable genetic modification: Encouraging and worrying

The government's decision about inheritable genetic modification is both encouraging and worrying. The proposed new law bans the genetic modification of sperm, eggs, or embryos for reproductive purposes. In other words, it prohibits the creation of genetically modified children-a very important step forward.

But the government also proposes to allow scientists to genetically engineer human embryos for research purposes. This is a disturbing and seemingly cynical move. What is the point of developing and perfecting techniques that would be ethically and socially disastrous if they were ever applied in practice? The government seems to be hoping that once techniques to safely modify embryos or gametes are developed, it will be able to persuade the public to allow them, using the conventional techniques of hype and emotional blackmail about the possibilities for curing sick children. In the meantime it hopes the ban will reassure public anxiety about "designer babies."

In justifying its ban on inheritable genetic modification, the government cites a range of international agreements and conventions, which it knows are based on ethical and social considerations that would not change even if the technology were to become technically safe. The idea that learning to genetically modify embryos is "just" research, and that research is always a good thing, is based on a naive assumption that science is a pure search for knowledge, uncontaminated by social interests. In fact, a decision to conduct research on genetic modification of human embryos is a decision to open certain possibilities and to take society in a direction that has already been judged desirable by the scientists and technocrats who support it.

If this recommendation becomes law, Britain will become the first country to explicitly permit the genetic engineering of human embryos. Human Genetics Alert (HGA) is extremely concerned that it will become a haven for maverick scientists and those who want to be the first to genetically engineer a human embryo. We will be campaigning vigorously to ensure that genetic engineering of embryos is not permitted in the new legislation, and welcome support from abroad for our campaign.

No hybrid embryos, but no permanent assurances

Another decision in the government's proposals, which has excited considerable media attention in recent weeks, is a ban on the creation of hybrid embryos containing part human and part animal material. But the government also proposes to include in the new law a provision that would allow it to subsequently overturn this ban without full parliamentary debate-another demonstration of the government's effort to placate both public opinion and scientific lobby groups.

A group of scientists who want to create hybrid embryos for stem cell research attracted a great deal of media coverage at the beginning of January by protesting the proposed policy, arguing that it would prevent them from developing vital cures for disease. As a result, both the HFEA and the Parliamentary Science and Technology Committee have announced public consultations on this issue.

HGA will support the ban on creating hybrid embryos. We believe that current research proposals involving the creation of hybrid embryos in order to produce stem cells are based on very poor science and are completely unnecessary. Although we do not oppose research on surplus embryos, we believe that creating embryos purely for the purposes of research is unacceptable because it makes the embryo nothing more than a source of biological raw material, and an experimental tool.

New criteria for embryo screening

The government's proposals also address criteria for the use of the embryo screening technique known as pre-implantation genetic diagnosis (PGD). Until now, the HFEA has developed PGD criteria in an ad-hoc way, partly as a result of public consultations. The government proposes to allow PGD for two purposes: "serious" medical conditions, disabilities or miscarriage; and tissue typing to provide umbilical cord blood to treat a sibling suffering a life-threatening illness. It will not allow the deliberate selection of an embryo affected by a disease or disorder.

The de-selection of embryos raises difficult and complex issues related to disability discrimination. Although the limitation of PGD to "serious" diseases appears helpful, this has already been interpreted by the HFEA as including non-fatal and late-onset conditions such as hereditary breast cancer and autism. HGA has opposed the use of PGD for tissue typing since, as with the creation of embryos purely for research, it turns human life into a tool for other purposes, rather than as an end in itself.

Conclusion

The government's proposals demonstrate that legislation and a regulatory body, although useful, do not provide a complete solution to the challenges of reproductive and genetic technologies-and that they may actually introduce further problems. The most serious is the spurious reassurance that the government and scientists are being responsible, and that they are not allowing technologies to go forward without ethical restraints.

Regulatory bodies such as the HFEA, even if not actually dominated by scientists and doctors with financial incentives in the technologies they oversee, are nonetheless controlled by a scientific discourse that makes "progress" and medical benefits the ruling ethical consideration and employs a bioethics that is incapable of drawing clear ethical lines. They make decisions on a case-by-case basis, without considering the social effects of the technologies' long-term trajectories. They appear to conduct serious deliberations on each step, yet they end up justifying the slide down the slippery slope because they can never say "no." In this instance, even the ban on sex selection was due to the overwhelming support of the public for it, rather than to any clear stance taken by the HFEA.

Legislation and regulatory bodies do provide useful points of purchase for critical NGOs, but by legitimating the momentum towards developing and using these powerful new technologies, they can also make the struggle to impose some restraints on them more difficult.


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