Testing times: Eugenics involve removing harmful genes from the gene pool

Imagine what it would be like to be a woman from a family riddled with breast cancer. Your mother died young from it, as did your aunt and your grandmother, before you were born. Embryos frozen for IVF can be tested for cancer genes.

You remember the heartbreak of seeing your mother and her sister undergoing gruelling treatment and yet eventually succumbing to the disease. Their experience was enough to persuade you to have a prophylactic double mastectomy in your twenties to reduce your risk of developing the disease. And now you want to have a child, but you are scared of conceiving a daughter.

You know that if she were to inherit the breast cancer genes that run in your family ? known as BRCA1 or BRCA2 ? she would have an 80 per cent of developing the disease, and a 40 per cent risk of ovarian cancer. What prolonged agony it would be watching her grow into womanhood knowing that she may have to decide, as you did, to have her breasts removed, or take a chance and face distressing treatments, surgery and possibly early death. Could you bear it?

Then you discover that geneticists have found a way of screening embryos for the rogue genes. If you were to undergo IVF, doctors could implant only those embryos without the cancer genes ? those carrying it would be discarded ? and your child would have the same chance of a life as the next child in her class. So what would you do? For most women and their families it would be a no-brainer and they now have cause to rejoice ?as do those with the single gene that determines an 80 per cent likelihood of certain colon cancers. The Human Fertilisation and Embryology Authority has granted permission for fertility clinics to offer Pre-implantation Genetic Diagnosis (PGD) screening where there is a family history of such cancers.

Individuals who opt for it will have to pay ?6,000, including fees for IVF ? sometimes distressing and not always successful. But if it works, it could mean peace of mind and a normal family life without the guilt that many carriers of such genes admit to feeling - or the shadow of premature death.

And yet, the news has not been greeted with universal enthusiasm. For some, this is cause for despair, a sign that the HFEA is pandering to the demands of a profit-driven fertility industry, keen to push back the boundaries of what can and can’t be done without giving sufficient consideration to the moral and legal implications.

“The EU Charter of Fundamental Rights prohibits eugenics,” according to Jacqueline Laing, senior lecturer in law at London Metropolitan University. “And what is PGD? It is destructive eugenics, it’s not therapeutic”.

“Once you commodify human life ? create, freeze and mass-produce it ? selection and quality control are the upshot. This move is driven entirely by the financial interests of the fertility industry”.

Critics of the HFEA and what they see as its increasing liberalisation talk of the dreaded “slippery slope” leading to somewhere very worrying. “What concerns me about PGD is that the rules have been stretched by the HFEA over the past decade,” says Josephine Quintavalle, who runs Comment on Reproductive Ethics (CORE).

“First, they allowed screening for diseases such as cystic fibrosis and muscular dystrophy where there was a certainty that the child would have the disease. Now they have moved on to a susceptibility to a disease that may develop only in later life and might very well be treated successfully. What next? And, because they are eliminating the carriers, it will mean there is less interest in finding a cure for those diseases, just as has already happened with cystic fibrosis and Down’s Syndrome.” The idea of wilfully destroying “faulty” embryos has also caused consternation among the disabled, who feel that the able-bodied world considers their lives lack value because they are less than perfect.

David King, a geneticist who runs Human Genetic Alert, has sympathy with that view: “Able-bodied people think: ‘I could never live with that,’ but disabled people do have meaningful lives.” King is also opposed to PGD because of his sister who died, aged 34, from ovarian cancer. “She had a wonderful life. I find it very upsetting when people say it would have been more rational for her never to have been born because she may have had a gene that pre-disposed her to this disease”.

Fertility experts are openly saying that PGD could save money for the NHS in future treatments. That is a pure eugenics argument. Those who run fertility clinics are used to the criticisms. Gillian Lockwood, chairman of the British Fertility Society’s ethics committee, shoots them down. “Half of all diseases are genetic and we should do anything we can to remove these horrible deleterious genes from the gene pool,” she says. “This is the best kind of preventive medicine”.

She bridles when accused of “tinkering” with genes, an emotive description of a simple, non-invasive process. At the stage where the fertilised embryos have multiplied into eight cells, one cell is taken and tested for the faulty gene, she explains, leaving seven single-cell embryos untouched, each of which has the potential to turn into a human being.

“Usually we choose to implant those embryos that look perkiest in the petri dish,” Lockwood explains. Selecting an embryo that will develop into a woman who does not have an 80 per cent chance of dying young is not the same as devaluing the lives of those who have physical problems. Nor does she buy the argument about all those much-loved people who might never have been born if PGD had existed. “Half the eggs fertilised naturally don’t become babies and we are not in a perpetual state of mourning.”