Geneticist Dr RUTH BANCEWICZ has spent time in the lab investigating the causes of eye defects developed at birth. She believes passionately that people facing tough moral medical decisions should understand all the possible options. She tells Nigel Bovey about some of the moral mazes of genetics

Ruth, what medical areas are you passionate about?

If people have a child - or an unborn child - with a serious genetic condition, or a risk of that in their family, they need to know how to cope. Also, in the future people might be offered genetic tests by their GP for a variety of things. Doctors have only a limited amount of time to talk through the options. There are trained genetic counsellors in this country, but I'm not sure how easy it is to see one or how much time they have to explain things.

A doctor, for example, can tell a parent that their child has a debilitating genetic condition. They can run a series of genetic tests. They can say how the child inherited the condition. They can calculate the chances of a future child inheriting the same condition. They can talk about the likely outcomes of possible treatments and therapies. But it is the parent who must make the decisions.

In times of personal crisis, people need someone to listen to them and help them understand everything that is about to happen. Each scenario raises its own set of questions: Should we take the risk of going full term? Should we take the risk of having another sick child? Should we opt for IVF? Should we not have children? Does gene therapy exist for this disease? (‘No' is the answer to this last question at the moment for almost all diseases, and that is unlikely to change in the next few years). The more knowledge we have about the genetic basis for disease, the more people will have to make these sorts of decisions.

I'd like more people to have a basic understanding of science and its moral implications so they are equipped for this type of situation, and can help other people when they are hurting.

As a Christian, I look to the Bible for guidance. There is no mention in it of 21st-century medical techniques, of course, but the Bible says a lot about how we should value and treat each other.

Many people think that the use of human embryonic stem cells in research is not valuing human life. Is that the way you see it?

I'm not a parent so I've never had a sick child. When I worked in a research lab it was easy enough for me to tell my supervisor that I didn't want to work with human embryonic cells. I felt that to work on cell lines from aborted embryos would be to profit from somebody else's loss. She respected my viewpoint. In fact, she was happy to rework a project to accommodate me.

Six years on there are different ways to create embryonic stem cells. Some of them involve creating an embryo that may possibly be viable if it were given a chance to develop. But these technologies are developed not to create viable embryos but to create cells for medical research.

Some people argue that every embryo should be treated as if it is potentially viable - as a potential human being - and shouldn't be used in research.

It's difficult because some things you may never find out unless you use these sorts of techniques, and some will save lives - whether there is an alternative is up for debate, but I think it is looking increasingly likely. I know Christians have different views on this, but we would all agree that we should respect embryos.

What other genetic-based issues do you think are important?

One recent discussion has been about payment for human egg and sperm donation. Eggs are needed for medical research. In America, young women get well paid for donating eggs. Egg donation is a risky procedure, and I hope these women know the potential impacts on their health and future prospects of fertility.

In the UK you can't pay for egg donation, so the implication for medical research is that eggs are hard to come by. It's far more attractive for volunteer egg donors to give to couples who are wanting children.

The shortage is so severe that scientists have just been licensed to create embryos for research that are a mixture, for instance, of a cow egg (with the DNA-containing nucleus removed) and a human nucleus.

A lot of coverage is given in the media to human trafficking, but there's also organ trafficking going on, with people being persuaded to sell some of their body organs. We need to be careful that something similar does not happen with egg donation. Infertile couples are going to countries where women are legally paid to donate eggs (so they are easier to get hold of) and at least one illegal clinic has been uncovered already. Unless people are willing to spend time finding out about new technologies and their potential uses and abuses, things will not improve.

How satisfied are you by the fact that in the UK research on embryonic cells is governed by law and regulated by the Human Embryology and Fertilisation Authority?

In any country where people have different moral standards there has to be compromise. In a democracy people are going to be allowed to do all sorts of things that others personally don't like, in lots of areas of life. That's what we all have to deal with, but I appreciate living in a democracy, and there are lots of opportunities for me to get involved in the decision-making processes so that my view is heard.

Any scientist in the UK will want to keep within the law and take the law very seriously. In animal welfare, for instance, a scientist can be jailed for breaching the licence agreement on the use of animals in the lab.

If a scientist breaks the law, or even lies in their research findings, they will lose their job and their credibility. This high level of accountability means that cases of scientists being dishonest in any aspect of their work are extremely rare.

The media often get excited about gene therapy and how it is the answer to all our diseases. To what extent is gene therapy likely to be the cure-all for debilitating and life-threatening conditions?

The idea that someone with a condition such as muscular dystrophy (a muscle-wasting disease) could be given an injection and have movement restored is fantastic. But that has not yet happened in a reliable way.

At the moment gene therapy could help a little with some forms of cancer and SCID (a very severe immune deficiency). But there are a lot of obstacles in gene therapy, and expense is just one of them. The big one is how to deliver the corrected gene to the right part of the patient. At present the potential for something to go wrong is immense.

I think a useful contribution that genetics could make to world health would be to focus on investigating the genetics behind the different ways people respond to treatment for the most common treatable diseases. There's potential for matching the genetic make-up of those affected with the most effective medication to combat the disease. Tailored treatments are already happening to a limited extent and could probably save a lot of lives.

Genetics also creeps into the headlines in connection with food production. How do you see the moral argument about genetically modified crops?

This issue has been blown up out of all proportion. I am disappointed that genetically modified (GM) food has become associated with this ‘Frankenfood' idea. It shows how uninformed people are.

I heard a survey that said 30 per cent of Europeans thought GM food was bad for you because it had DNA in it. Everything we eat has DNA in it! In fact, some of the things on our plates have more DNA in them than we do.

To be fair, people were very cautious about GM food because we had just been through the BSE issue, so they didn't quite trust what they were told. The truth is, ever since the ‘green revolution' after the Second World War we have been using GM food. Scare stories about GM food have stood in the way of what I think is a life-saving technology.

Rice, a staple food in much of the world, can be genetically modified to contain more vitamin A. Vitamin A can help pregnant women have healthier babies. Thankfully, people in the developing world are using this ‘golden rice' now, but generally the public is uninformed about the benefits of GM crops.

Crops that are more resistant to pests and have less need of water are also highly beneficial, especially as climate change takes hold. To me, GM crops may well be an absolute necessity, so long as their use is well controlled. To leave their use to private companies may not be wise.

To what extent do genes affect our behaviour?

This is about ‘genetic determinism' - ‘I did it because my genes made me.' Behaviour is a really complex area, and any genetic component is going to be mixed with a load of other factors. There is one genetic factor that we know does have quite a strong effect on behaviour, but it's something that no one would ever give as an excuse in court. Almost every criminal in the country possesses it. It is the Y chromosome, which is normally present only in males. There are many more men in prison than women.

But that doesn't mean that a bloke who says to the judge, ‘My male chromosome made me do it' is likely to be let off. Clearly there are billions of other men in the world who don't break the law.

There might, of course, be a genetic disease which does cause someone to act in a particular way but that would be rare.

Although we may have certain abilities that we are born with, human behaviour involves thinking about consequences and taking personal responsibility for our actions. I don't think that, for most people, genes can be an excuse not to take that seriously.

War Cry 12 September 2009

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