Moral maze of the embryo decision

LIFE used to be a bit of a lottery. Some people got cancer, some people didn't; some people got heart disease, some people didn't. But now science has provided us with a way to rig the draw.

The Human Fertility and Embryology Authority (HFEA), set up by Parliament to oversee fertility treatment, confirmed this week that it had granted a licence to a London clinic to test embryos for a rare genetic mutation linked to colon cancer.

In the past, the authority has licensed screening for the genetic form of cystic fibrosis and Huntington's disease, but Monday's licence was the first time pre-implantation genetic diagnosis (PGD) has been given the go-ahead for a disease that does not put a child at immediate risk.

Supporters have greeted the decision as an important landmark, paving the way for fertility clinics to apply to screen embryos for other genes linked to cancers, such as the BRCA1 and BRCA2 genes for breast cancer, which can increase a woman's risk of contracting the disease by 80 per cent.

Critics, most notably the pressure group GeneWatch UK, have, however, rounded on the new licence, claiming it was made behind closed doors in an undemocratic manner by an unelected authority and could, in time, open the floodgates to wholesale screening of embryos.

Dr Anne Kerr, a York University sociologist, is carrying out a study with her colleague, Professor Henry Leese, a leading embryologist in the department of biology, into how clinicians deal with the complex and sensitive ethics of IVF and embryo research. Irrespective of the pros and cons, she was surprised this week's decision was made at all.

"I was surprised because the Human Genetics Commission and the House of Commons Science and Technology Committee public consultations on this issue are not yet complete," she said.

"Although members of the HFEA are very aware of public concern about this issue, it has been criticised as being quite a bureaucratic organisation.

"Because of this bureaucracy, there is a danger that it ends up making decisions on what could be described as technical details, when perhaps it should be taking the bigger picture into account.

"Sometimes wider ethical issues get put on the backburner."

This week's decision was made by a three-member panel without any public consultation. Dr Kerr hopes the Human Genetics Commission, headed by Baroness Helena Kennedy, right, will come up with clear recommendations that will stop similar piecemeal decisions being made in the future. In the meantime, she is in favour of reorganising the HFEA.

"It is often accused of being too clubby on the one hand and too bureaucratic on the other," she said. "The main problem, however, is its lack of transparency. It's only just started releasing minutes of meetings.

"Confidentiality is, of course, a concern in individual cases, but the HFEA has become so caught up in its own culture of confidentiality that everything has been kept under wraps."

The new licence only applies to people carrying familial adenomatous polyposis, which is an inherited genetic colon condition. If passed on, it can lead to the development of colon or rectal cancer in early teens.

It is believed four couples, who have a 50 per cent chance of passing on the condition to their child, are already lined up to take advantage of the decision. Their IVF embryos will all be screened and only those clear of the mutation will be considered for implantation.

"Previous applications of PGD have mainly been concerned with very severe childhood diseases," said Dr Kerr. "Now we are moving into less serious conditions that usually occur later in life and can be more easily treated. The question arises: where do we draw the line?"

Taking this argument to its ultimate conclusion, could we be looking at a future in which widespread testing to create genetically perfect babies is the norm? Not, according to Dr Kerr, if you factor in human nature.

"Patients don't necessarily behave as expected," she said. "The media might get hysterical about this issue, but the public tends to be more level-headed.

"I've spoken to a lot of people as part of my research, including scientists, and most have been pretty ambivalent. While they worry about their social implications and wouldn't necessarily opt for them themselves, they don't see why other people should be denied these tests."

Supporters of the HFEA's decision argue that the technology is already available to sort, in crude terms, the bad embryos from the good and that it is only right that people should be given the choice.

The Government's vision of health also seems to be about arming patients with as much information as possible.

But critics of this stance, including families with known genetic conditions, say choice and information can be dangerous, especially as they could ultimately lead to whole sections of the population being scientifically removed from society.

"When this issue arises, people always talk about individual choice and how we have to take a libertarian view," said Dr Kerr. "But I'm not comfortable with that argument. Why does individual choice have to be the trump card?"

Eighty per cent of assisted conception services are private. So, even if screening continues to be extended, it will not necessarily be a choice open to all.

"It's often argued that it's impossible to stop this juggernaut, but science and technology are not immune to social control," Dr Kerr continued. "If there comes a time when screening is available for virtually everything, there is the danger that it will be a choice for the wealthy minority.

"While this is all going on, the things that really matter to health, boring things like poverty and inequality, continue to go unchecked."

Fact file:

What is IVF?

In Vitro Fertilisation (IVF) is a process in which an egg is surgically removed from the ovary and fertilised outside the body. One in seven UK couples trying for a baby experience delays in conceiving. Conception is a complex process involving many factors, and if one of these factors is impaired, infertility can result. IVF is one method used to help people with fertility problems to have a baby. About 6,000 babies are born as a result of IVF each year. However, it should be noted that the procedure has an average success rate of only 15 per cent.

The typical cost of one IVF cycle at a private clinic is £2,000. However, from April 2005, all Primary Care Trusts should be offering at least one cycle of IVF treatment on the NHS to infertile couples.

Women must be aged between 23 and 39 to qualify for free treatment. In addition, they must either have a specific problem such as blocked fallopian tubes, or have been unable to conceive for three years despite regular intercourse and no identifiable problem.

How is it performed?

The main IVF technique was developed in the 1970s and involves giving the woman fertility drugs to stimulate egg production, and then surgically retrieving the eggs from the ovaries. She is then given hormones to prepare her uterus for pregnancy, while the eggs are fertilised with sperm in a laboratory. The embryos are then implanted into the woman's uterus, and if all goes well a normal pregnancy is achieved.

The Human Fertilisation and Embryology Authority's code of practice for clinics states the number of embryo transfers should be limited to two for most women. However, women over 40, whose chances of a baby are smaller, may have more.

What are the risks?

Assisted conception brings several risks.

The diagnostic and treatment procedures can involve discomfort, particularly for the woman undergoing IVF, who may experience side effects from fertility drugs involved and may find the egg retrieval uncomfortable.

Ovarian hyperstimulation syndrome (OHSS) is a rare but known side effect. It occurs when fertility drugs given to stimulate egg production are so successful that the ovaries cannot cope with the increased number of eggs. A mild incidence can cause pain and bloating. If the over-stimulation is severe, blood clots, kidney damage and twisting of the ovaries may occur, and monitoring in hospital will be required.

Some assisted conception techniques carry an increased risk of ectopic pregnancy, where the fertilised egg implants in the fallopian tubes instead of the uterus.

Facts and figures: NHS Direct

Updated: 08:52 Wednesday, November 03, 2004