Institute to tackle ethical issues

Ethical dilemmas such as life support and embryonic stem cell research will be considered at a new institute at Dublin City University

ADVANCES IN medical science can undoubtedly save lives, but progress also throws up some thorny ethical questions. When is it acceptable to turn off life support and let someone die? If we don't have a cure for a genetic disease, should we offer people tests for their risk of developing it? And when do the potential benefits of embryonic stem cell research outweigh the moral arguments against it?

A new institute to be set up at Dublin City University (DCU) later this year aims to look at ethical issues across the board, including healthcare, according to incoming director, Dr Bert Gordijn.

Currently a lecturer in bioethics at the University of Nijmegen, Gordijn will move to DCU this September to build up the new institute, more than two years after plans to create it were announced.

The resulting institute will teach, carry out research and provide services in ethics across a range of areas including healthcare and life sciences, business, politics, law, journalism and technology, according to Gordijn.

In healthcare ethics, his own area of specialty, he sees much meat for discussion. "The most pressing problem in global healthcare ethics is a huge inequity. There are parts of the world where basic structures for healthcare are missing," he says.

"One of the challenges, I think, of healthcare ethics today, from a global perspective, is to set up healthcare structures for research and ethics committees in these countries."

Closer to home, issues such as hospital ethics come to the fore, and the question is often about when to withdraw treatment in specific situations, explains Gordijn, who has been asked to help in harrowing cases where patients are kept artificially alive on life support.

"Sometimes as an ethicist you will be called into a situation and your task will be in a conversation to clarify what is at stake here, which can be very difficult because sometimes in these situations the emotions are very strong," he says.

In one instance, the parents of a young woman who was in a vegetative state after a car crash wanted the life support switched off so their daughter could die.

"I had to talk with the parents and explain that we can't do it in the hospital because that would basically be killing without request - it's illegal, there are also grave moral problems. But still her parents were so convinced that life in that state was totally meaningless, and they were also very emotional," he recalls.

"What you would do in that situation is wait until there is an infection and then decide not to treat the infection so somebody can die naturally. But for the parents it was a very semantic distinction - they said well if you can do that why can't you actively just kill her?

"They felt basically it's the same thing, but medically, psychologically, judicially and morally, it's not the same thing."

The ethicist's role is usually to moderate such discussions, and the first step is to formulate the problem, he explains. "That's because if you start a discussion and nobody really knows what the problem is, people can have different problems in their heads and miscommunication can happen really easily."

Other steps include gathering the facts, looking at the relevant moral considerations and finally coming to a decision. "There has to be a specific decision, it's not pure philosophy," says Gordijn, who hopes to establish contacts with clinics in Dublin.

Another issue where ethics plays a central role is the use of embryonic stem cells for research, an area that Gordijn sees as a tricky balance.

"Whatever solution you try to come up with, it is difficult because there are different principles that play a role and are important, and it's difficult to comply with those principles at the very same time. Many governments promote research, because of the promise that research can bring new therapies, and they don't want to miss the boat. But on the other hand there is a respect for life," he says.

"Many governments have tried to come up with solutions but they are problematic. For example, the Germans have the policy that human embryonic stem cells cannot be set up in Germany itself, but you can use them. It's a difficult policy."

Another knotty area is testing for disease or the risk of developing a condition, particularly if there is no cure, according to Gordijn.

"One of the problems, I think, with the development of better diagnostic technologies is that you generate loads of information and this creates a privacy problem for example, especially with genetics," he says.

"And you can ask when is medical information really useful, because with genetics sometimes we generate information about predispositions, certain risks, but at the same time we don't have a therapy. So we have a gap between the information and the therapeutic possibilities which can generate problems, especially in prenatal diagnosis - when we get more tests for certain predispositions, will we do the tests prenatally, and if so then what is the use of doing so?"

Gordijn will start to build the institute by engaging with the university and wider community to see what is needed, and describes the opportunity as a "dream job", but a challenging one. And ultimately the goal will be to make for a better environment in which people can work and be treated, he says.