The subject of ethics in research is discussed more fully in chapter 6. In this section we explore some of the ethical dilemmas that healthcare researchers face on a day-to-day basis. These are:

• The ethics of undertaking research using human subjects.
  
• The ethics of undertaking research using vulnerable human subjects.
  
• The ethics of undertaking research using embryos.
  
• The ethics of undertaking research using animals.

The ethics of research using human subjects

The National Health and Medical Research Council report states that ‘Contemporary ethical dilemmas in the field of research on humans are many and complex’ (2006: 57). It acknowledges that these dilemmas have existed for a long time and can be grouped under the following headings:

• Consent.
  
• Participant safety.
  
• Scientific merit.
  
• Conflict of interest.
  
• Risk versus benefits.
  
• Protection of vulnerable people.
  
• Disclosure of information to participants/families.
  
• Privacy.
  
• Confidentiality.

These are covered in chapter 6, so we shall not discuss them again here.

A report by the National Health and Medical Research Council (2006) looks into the complexity of the ethics of undertaking research on human subjects and notes that there are four main factors that contribute to this increasing complexity:

Thus, the increasing complexity of research involving humans, as demonstrated in these four points, gives rise to decision-making about ethics that ‘requires either an entirely new approach or an integrated approach of a kind the particular committee has never before confronted’ (National Health and Medical Research Council 2006: 58).

The ethics of undertaking research using vulnerable humans

One aspect of research using human beings is, of course, research using vulnerable human beings (see also chapter 6). This section links the previous section (human subjects) with the next (embryos) because embryos are extremely vulnerable (although the argument could be made that they might not be fully human).

Just who is vulnerable when it comes to research? Well, one could argue that everybody who participates in research is vulnerable, because there are often perceived power differences between the researchers and the participants. Some people, however, due to illness, age or limited intellectual capacity, are particularly susceptible and vulnerable (e.g. children). With children, the problem of informed consent is especially acute, as are the physical, intellectual and developmental differences between them as children and the researchers as adults. Research with children, however, just as with research with all types of patients, is recognised as being morally necessary; in other words, it is a moral duty as long as the research is based on ethical principles (Canadian Paediatric Society 2008) and is concerned mainly with:

• Distributive justice – making high quality healthcare available to all, including vulnerable children.
  
• Beneficence – providing high quality care which will benefit all.
  
• Non-maleficence – avoiding harmful therapies.

As the Canadian Paediatric Society (2008: 707) states: ‘children may be harmed if health care providers do not provide care based on the best available evidence.’

However, there are many more vulnerable groups of patients than just children – for example, people with mental health problems and people with life-limiting illnesses (e.g. cancer, HIV).

In terms of undertaking research with vulnerable people, it has been argued that palliative care is faced with more moral problems than are found in any other areas of healthcare (Randall&Downie 1999). Similarly, it is often argued that palliative care has a specific moral dimension (Janssens et al. 1999, Hermsen&ten Have 2001). Hermsen&ten Have (2001) argue that if this is the case, then palliative care will include moral issues that are intrinsically related to it. With this philosophical and ethical argument in mind, one of the areas in which the ethical dimensions of palliative care come to the fore can be found in all aspects of research in this group of patients. However, unless research is undertaken with these patients then their care will never improve. As both Karim (2000) and Polit&Hungler (1999) strongly point out, it is the vulnerability of patients undergoing palliative care that is a major issue arising out of the sensitivity of actually conducting research with them.

Turning to research involving patients accessing palliative care, Polit&Hungler (1999) point out that conducting research with people who are dying is problematic because of their particular vulnerability as they may be at high risk of unforeseen and unintended side-effects due to their particular circumstances. Consequently, Polit&Hungler (1999) feel that these patients need more protection than is given by the general framework of ethics and ethical research guidelines.

What are these vulnerabilities that have to be taken into consideration by a researcher involved in research studies with patients accessing palliative care and their families? Karim (2000) identifies seven concerns:

To conclude this section, Lee & Kristjanson (2003) stress that without research, there is a risk that nothing new will be attempted and that there will be a failure to scrutinise how we care for dying people. In addition, they point out that without research to demonstrate and justify the value of palliative care services, palliative care providers may find it increasingly difficult to attract funding.

From a social justice perspective, as Rawls (1971) suggests, all members of the community have an interest in the provision of good healthcare because each member of that community may need healthcare in the future, and some may need access to palliative care. Therefore, each member of the community has an interest in ensuring that good palliative care is available – care that is based on the best evidence provided by ethical research.

Seymour&Ingleton (1999) argue that it is important that we develop models of research for accessing users’ views. However, in terms of palliative care, as Seymour&Skilbeck (2002: 219) state: ‘this requires striking a fine balance between the ethical duties of providing caring support, nurturing independence and autonomy, and achieving research outcomes that are rigorous while also being accessible and meaningful to users.’ Researchers have a responsibility to ensure that their findings will be of value and that the rights of the participants are protected. They should acknowledge and honour the rights of palliative care patients, families and healthcare workers who choose to be involved in their research. It is only through research into the experiences and needs of patients accessing palliative care, and their families, that palliative care researchers and clinicians can better understand the needs of the community and improve the quality of the care they provide (Lee&Kristjanson 2003).

Thus, the point is well made that research needs to be undertaken with people who are vulnerable – indeed, one could say that it must be undertaken – if we are to improve our care of them.

The ethics of undertaking research using embryos

This remains highly contentious in research circles, as well as among scientists, politicians, people with strong religious convictions, humanists and the general public. Where you fall in this debate depends on your background, convictions and what you believe embryos to be. Do you believe that an embryo is a person? If so, then you will be governed by your views on the ethics of undertaking research with human subjects.

What is an embryo? Embryo research takes place in the very early days of the development of the embryo when it is basically a bundle of cells with few of the characteristics that we associate with a human being both anatomically and physiologically – it is simply a fertilised human egg. On the other hand, this fertilised egg does have the capacity to become a person if left to develop. While still an embryo, though, it has no brain, no consciousness or self-awareness, and certainly no neurological function that will allow it to feel pain or experience emotion. An embryo is consequently not capable of suffering physically or emotionally.

So, our thoughts and decisions are guided by how we view the embryo at this early stage – a bundle of cells with no feelings, or a potential human being with all that that implies. This is the moral dilemma that we, and those either supportive of or against embryo research, have to wrestle with.

There is a further moral dimension to this problem: what do we intend to do with these embryos – i.e. what is the research for? Embryo research is a vital part of our research into the treatment and cure of many catastrophic medical conditions (e.g. Parkinson’s disease, Alzheimer’s disease, diabetes, spinal cord injury) (Sandel 2004). Are we denying the right to health, and even life, of others if we refuse to allow research to take place using human embryos? To counteract that, we need to look at the discussion on research ethics (chapter 6) and the difference between maleficence and beneficence. Certainly for the embryo, research on it is harmful as it always dies, and certainly there is no benefit that accrues to it from the research.

This debate requires a whole chapter, if not a whole book, to do it justice, but to move on we shall briefly summarise both sides of the argument, which is linked to the belief of when life begins.

• Against embryo research: all conclusions against embryo research are based on the fundamental belief that a human life begins at conception – when the egg is fertilised. Consequently, the embryo is seen as a human being, with all the rights accruing to being human, at the very moment of conception. As far as those against embryo research are concerned, any experiments that put the embryo at risk are not only unlawful they are morally abhorrent – the ethical equivalent of medical experiments on unwilling or uninformed victims (after all, the embryo cannot give permission for the experiment). In addition, although the research could lead to new, life-saving treatments, the embryo is eventually killed or, at the very least, is put at great risk. Is this justified, no matter what the potential benefits to mankind in general may be? In other words, the ends should not justify the means.
  
• For embryo research: all conclusions for embryo research by those who support it are based on the belief that life does not commence at the moment of conception. That gives rise only to a ‘potential’ human being, as opposed to an actual one. Where you stand on the potentiality of being a human being compared to actually being one determines whether you are in one camp in this argument or in another. Consequently, people who are for research using embryos tend (but not necessarily always) to advocate that an embryo becomes a human being when: