A 12-year-old girl is lying in a bed at Great Ormond Street Hospital for Children. Her face is still but her chest keeps rising. She is dying of a respiratory disease. While the ventilator is on, she is kept comfortable and sedated. But when it's turned off she can breathe for herself, think for herself - and communicate, at least non-verbally.
The question is: should the girl be woken up and told that she is soon going to die?
Such decisions used to be taken by doctors in consultation with parents, who usually had the final say.
Nowadays this decision is more likely to be taken by an anonymous hospital ethics committee. None of the ethics committee members will have necessarily met the dying girl or her parents. Nor will they necessarily be medical professionals. But they will possibly have attended a three-day university course entitled "Introduction to Ethics".
Such basic courses pack up to 30 people in a room for eight hours a day and it can cost £3,000 to hire two lecturers a day to run the courses. Participants are steered through concepts such as "informed consent", "confidentiality" and the difference between "qualitative" and "quantitative" research. They will discuss real-life case studies and how best to consider them from within an ethical framework.
"Lots of universities are realising that there is a very large market out there for non-degree courses, bespoke courses or workshops," says David Archard, professor of philosophy and public policy at the University of Lancaster. "But generic training isn't effective except when dealing with basic concepts such as 'confidentiality' and 'informed consent'. People are left thinking they have an ethics training when in fact they haven't. It's shallow."
Archard's opinion of such courses has not stopped a rise in the number of them being offered by British universities. The University of Keele and King's College London were until recently thought to have cornered the market (Keele's ethics department has almost tripled in size since 2003). But a recent survey by Leeds Metropolitan University of the UK institutions offering professionals training in research ethics found that places such as the universities of Hertfordshire, Greenwich and Kent were all edging in on the market, alongside the universities of Oxford, Manchester and Leeds.
"It works for Keele because of the money they charge," Archard says. "They've made a professional gamble where they have situated themselves as primary providers of short-term courses in ethics, and it pays the salaries of their staff.
"But the idea that an ethics course equips someone to always get it right seems to me to be wrong. What do they bring to the party? They can offer dispassionate and calm advice. But they can't necessarily offer an authoritative judgment on what needs to be done."
Still, the ethics revolution creeps on. The most popular short courses tend to follow one of two strands. The first, aimed at employees of the National Health Service, police officers and lawyers, is professional ethics. This focuses on helping staff develop a system to think through real-life dilemmas, such as whether the 12-year-old girl should be told she is dying. The other is research ethics - designed for professionals and lay people on research ethics committees, such as those forming part of the Human Fertilisation and Embryology Authority. These courses cover basic concepts such as the difference between "qualitative" and "quantitative" research.
Archard believes that both types of courses are flawed. "Let's take professional ethics. A lot is written about the best way to train doctors about medical ethics. But if you give doctors a list of ethical principles - such as 'don't do harm' or 'get consent' - you haven't necessarily trained them to be ethically sensitive." Training must be continuous and set in a professional context such as a hospital ward, he says.
Courses in research ethics do not win Archard's approval because they target the wrong crowd. "You get people on the course who are engaged with primary scientific research. Arguably they are not the ones needing ethics training since their work is already vetted by ethics committees. It is the senior researchers vetting the research who need the training."
James Wilson, in contrast, sees the courses as a good thing. "The fact that institutions want people with expertise in ethical thinking and are willing to invest in their staff is very encouraging." Wilson, who works at Keele's Centre for Professional Ethics and lectures on some of the short courses, says: "My mother was a doctor and there was no such thing as medical ethics when she was training."
He is excited by the growth in the market for short courses. "When I first came here in 2004, the department had four teaching staff. By October of this year, there will be 11 members of staff in the department. The biggest growth in the past few years has been training people who sit on ethics committees for the NHS and other universities. At the moment it is only in the public sector, but my prediction is that small and large businesses will soon be wanting ethical training.
"Our courses teach professionals a common language. If you are a nurse and you want to talk to a doctor about issues to do with confidentiality or patient consent, the course gives you a shared language with which to make your points more forcefully. It gives people the language skills they need to stand up for what they believe in and to explain why they want to change certain practices.
"But overall we aim to give people the tools to reflect ethically on their own behaviour. It would be inappropriate to lay down the law on what people should be doing. Jobs are too complicated for us to say: 'Here are ten rules. Go and memorise them.'"
Richard Nicholson, editor of the Bulletin of Medical Ethics and director of short courses for research ethics committee members at King's College London, is critical of the value of such courses.
"People think that if they do these courses and show an interest in ethics, it will look good on their CV and it means that they are good people. Yes, short courses can provide people with the basic tools and an opportunity to think for a day or two. But people with a serious interest in ethics are better off doing a postgraduate course in medical ethics or medical law - and those have been going on since the 1970s."
Bobbie Farsides, professor of clinical and biomedical ethics at Brighton and Sussex Medical School, agrees. She feels that too many hospitals have a "tick-box" approach to ethics that may suit practitioners seeking a one-stop solution but is of little practical use. As an example, she cites the four-principles approach, which is the dominant model on ethics courses in the US.
"I'm not very keen on the four principles as an approach being taught on some ethics courses. It says that if you think in terms of four overriding principles - autonomy (the right of the individual to determine his or her own fate), beneficence (the obligation to help others fulfil their potential), justice (the fair allocation of healthcare resources) and non-maleficence (do not harm) - then you can crack most ethical problems."
Farsides, who taught some of the short courses in ethical studies at King's until she left 18 months ago, says: "The real challenge is to teach students how to identify the ethical problem and the extent to which the context should influence how you deal with it. I use a lot of case studies and scenarios to situate the ethical problem in the real world. That makes it very attractive to clinicians."
Public interest in ethics in the UK increased dramatically following the "organ harvesting" scandal at Alder Hey Children's Hospital in 1998. Government guidelines were later issued making it clear to parents and pathologists that organs and tissues could not be removed "for scientific research" without parental permission - but not before the parents of 845 children had to go through the heartbreak of reburying parts of their children's bodies.
Pathologists around the UK had been removing organs from children's bodies without permission for years, but no one had ever questioned the practice. "Doctors at Alder Hey were just doing what they'd always done," Wilson says. "They didn't think that what they were doing was wrong."
The outcry over Alder Hey illustrated vividly how society was shifting and highlighted a need for ethical clarification and guidance. Most of all, it was a wake-up call for medical practitioners.
"Since then, doctors have learnt the need to justify their decisions to patients. They understand the need for more transparency," Wilson says. "Our courses don't try to turn them into good people. We just try to help them be reflective, ethical practitioners who have the skills to think creatively about problems that arise."
Stuart Oultram, a teaching fellow at the Centre for Professional Ethics at Keele, agrees that the medical profession had been ripe for change. "For a long time it was felt that doctors could deceive patients - that there was no need to tell them everything they needed to know. That culture has now changed. There is a desire by ordinary people to hold institutions to account. Professionals have had to analyse the way they behave towards their patients - partly due to outside pressure and partly because of high-profile scandals."
It's not only the medical profession that has been forced to make ethics a priority. "When I attend medical ethics conferences, I meet a range of professionals - sociologists, lawyers, anthropologists, management, surgeons and chaplains. That is because everyone has a stake in the subject," Oultram says.
A desire to avoid lawsuits might be a blunter explanation for the sudden surge of interest in ethics training, suggests Anthony Wrigley, director of the Research Ethics Committee training programme at Keele.
"Professionals involved with policing and criminal justice need help in this area - as do doctors dealing with the implications of new medical technologies," he says. "People want help because they are afraid of making decisions with howling errors that later lead to legal challenges to their decision-making."
But there should be nothing mysterious about "good" decision-making to anyone who has had a grounding in ethics, Wrigley says. "It is just a question of going through a reasonable process of what reasonable people in society would think is ethically correct. Our ethics training shows our clients how to systematise their thoughts and articulate their own natural ethical intuitions.
"People on ethics committees may not always make good decisions. They may even allow suspect research to take place when it shouldn't. But society should rest comfortably knowing that the process of research is being scrutinised by people who hold the kind of viewpoints that society itself holds."
Is there a danger that people leave those courses with "delusions of grandeur" about their abilities to make life-and-death decisions on behalf of the rest of society?
"It is just the opposite," Wrigley says. "By giving people formal training, you broaden their minds rather than limit them ... People are obliged to justify and reason through their views rather than stick to a dogmatic position."
Besides, grappling with real ethical dilemmas is tougher than studying pure philosophy, and closeness to the issues and their impacts helps committee members keep a sense of perspective. "It matters a lot to get it right," Wilson says. "Issues such as the allocation of medical resources are tough. Ethics committee members involved in the minutiae of such decision-making quickly realise how hard it is. It is much harder than technical philosophy questions; it has a huge impact on people's lives."
Even if "newly trained" ethics committee members can be criticised for lacking formal training in ethics, "it would be hard to construct an ethics committee made up of only ethicists", Wrigley says. "Dedicated researchers may have a skewed idea of what is useful." The ideal ethics committee would have a cross-section of society. But to get that, individuals need training in basic ethical theory and research methods, he says. "And this is what we provide."
The "Introduction to Ethics" courses differ in their offerings, but the best of them are practice-based. "It's about teaching a doctor how to recognise when there is a problem rather than imparting knowledge or principles," Archard says.
He thinks Great Ormond Street Hospital for Children has got it right: in 2005, it hired a consultant ethicist who dealt with 40 referrals in the first year alone - as well as offering workshops for staff. Before long, it was decided that one ethicist was not enough. In 2007, the Centre for Paediatric Ethics was set up, consisting of 20 volunteers from a variety of medical and non-medical disciplines. Ethics is now integral to the hospital's culture.
Sue Eckstein, former director of programme development at King's, used to offer three-day courses for ethics committee members before she moved to the Brighton and Sussex Medical School. She is an advocate of practice-based teaching. "Many of our clients would already have spent several months sitting as an observer on an ethics committee before attending our courses," she says.
The one-day courses are extremely valuable to lay members, she says. "It is enough for people to realise that you can't have a gut reaction and allow yourself to make an ethical decision based on that alone. You can't dismiss stem-cell research as 'yucky' just because it doesn't agree with your values. You need to be taught a logical way of thinking it through."
Jonathan Koffman teaches ethics at King's. "Ethics committees need these courses. Once upon a time they didn't exist, so decisions were made in a vacuum. Now they do exist, and they fulfil a niche market. I don't see problems with these short courses. These people are working; they can't afford the time to attend longer courses. Our students are fit for purpose by the time we send them back into the workplace."
And he has no worries that lay people are being left to make critical decisions on behalf of society with a three-day course their only training in ethics.
Wrigley concurs. "They have a lot of backup from scientifically based committees, specialists and advisers. The reality is that most of the proposals they are dealing with have already gone through a scientific referee process and have been given the go-ahead. Research ethics committees are just another layer on top of that."
Archard remains unconvinced. "I do worry about the quality of training," he says. "We don't have national standards because short ethics courses are so new. I would advise the organisers of such ethics courses: 'Be modest in the aim of the courses you run.' By all means introduce people to the core principles of an ethics training - that can be done in a workshop - and ideally within the context of continual professional development. But avoid being over-ambitious."
Eckstein says it could be a good idea to monitor provision. "At the moment, anyone can run an ethics course. The standard of courses we ran at King's was good, but I did feel there should be some kind of accreditation. I'm glad that ethics courses are firmly lodged within academic institutions rather than the Department of Health. If it were in-house, the training would be practical: how to fill in an ethics form."
Farsides says she feels "entirely confident" about sending someone to Keele or King's for a short course in ethics. Yes, standards should be monitored, she says, but the onus should be on course providers to be "clear that they are providing something useful and appropriate and are using the right people to supply it. Besides, if word gets round that something isn't good, people stop going anyway."
Nicholson at King's is buoyant about the future despite his cynicism regarding the motives of his students: "Ethics committees are getting faster, and decisions - on the whole - are pretty good."
But there is progress to be made, and much of it needs to be made in hospitals, he says. "Ethics is not taken seriously enough by senior doctors who don't have ethics training. And the number of doctors brought before the General Medical Council on issues of misconduct continues to rise. I don't believe that people in this country know how to behave ethically. We need to be teaching philosophy to our schoolchildren - like they do in France."
