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DISCUSSION

Ethics in research: practice and respect

Research ethics are founded on respect for people and their right to make their own decisions. These principles should be applied to all nursing practice

In this article…

  • How respect underpins research ethics
  • Why informed consent is a continuous process
  • Using research principles in nursing practice

Authors

Allan Gaw is associate director for educational quality standards; Fiona O’Neill is head of workforce and organisational development; both at the National Institute for Health Research Clinical Research Network.

Abstract

Gaw A, O’Neill FH (2014) Ethics in research: practice and respect. Nursing Times; 110: 20, 12-13.


Nursing practice is informed by research, and all nurses, midwives and care staff should be research aware even if they do not consider themselves research active. The principles of research ethics, based on respect for individuals, should not be confined to research. All nurses must be aware of these principles, and practise in accordance with them.

  • This article has been double-blind peer reviewed
  • Figures and tables can be seen in the attached print-friendly PDF file of the complete article in the ‘Files’ section of this page

 

5 key points

  1. All NHS clinical research should be conducted in accordance with the Good Clinical Practice principles of clinical research
  2. The GCP principles insist that we conduct our studies at all times with respect for our participants
  3. Respect involves following the maxim “no decision about me without me” when gaining informed consent
  4. Informed consent is an ongoing process, not a single decision recorded on a piece of paper
  5. Respect should be free of condescension and built on mutual trust and transparency

 

In healthcare there is a basic dilemma experienced by all nurses, midwives and care staff. To care for patients, we must often intervene in ways that in everyday life would be considered at best inappropriate and at worst immoral or illegal. We ask questions seeking sensitive personal information, we touch, we press, we probe and we may even hurt. However, we do all this with the intention of providing care and in patients’ best interests.

In clinical research, this dilemma is magnified, for here our intention is no longer the provision of care, but the discovery of information that we hope will inform the care of others. The response to this dilemma has been to adopt principles of ethical practice that are built upon the notion of respect. They apply to both healthcare and research, but it is in research that we find ourselves addressing ethical issues most commonly.

Much has been written about “research ethics” as if these were a set of principles distinct from the ethics of everyday interactions with patients (Emanuel et al, 2008). They are not. To divide our work into care and research is arbitrary and incorrect, since all healthcare practice is informed by research and, the line between care and research is becoming increasingly blurred.

All nurses, midwives and care staff must be research aware even if they do not consider themselves research active. The principles of research ethics have a wide and encompassing place in the profession as a whole and should not be confined to research. All nurses must be aware of these principles and practise in line with them.

Respect in practice

To respect a person is to acknowledge their individuality, their dignity and their right to make their own decisions regarding matters that will affect them. If we respect a person, we must be honest with them, answer their questions and consider their wellbeing at all times.

Respect is central to a culture of compassionate care in the NHS, as defined in Compassion in Practice, the vision and strategy for nurses, midwives and care staff (Cummings and Bennett, 2012). Compassion may be seen by some as a soft attribute, implying a passive absence of ill feeling. However, this vision reminds us that if compassion is to be meaningful it must be active, and requires a range of values and behaviours that are knitted together in the 6Cs set out in Compassion in Practice (Department of Health, 2012).

Consent

When we put respect at the heart of our practice, we can see how clinical research contributes to a culture of compassionate care. One of the most important ways in which we show respect is by following the definition of communication in the 6Cs: focusing on listening and applying the maxim of “no decision about me without me” when we formally seek the informed consent of our participants.

There are many definitions of informed consent - all should emphasise that this is a process rather than a one-off event, and certainly not just a piece of paper. It is a process that begins before a potential participant agrees to take part in a study and continues throughout the study.

The process is built around the exchange of information between researchers and participants, which allows people to decide whether to continue their participation once started. Nurses play a crucial role in ensuring informed consent remains an ongoing and dynamic process and that the voice of the participant is always heard at all stages of their research journey (National Institute for Health Research, 2013).

We need to take consent for a number of reasons. Clinical research is carried out in a highly regulated environment, where ethical principles and laws are translated into a range of guidance documents, professional codes of practice and governance frameworks. All NHS clinical research should be conducted in accordance with principles of clinical research known as Good Clinical Practice (GCP) (DH, 2005). These insist we conduct studies as safely as possible, to the highest possible quality and at all times with respect for our participants.

Nurses play an important role in effective and sustained communication between the different members of the research study team, promoting the translation of GCP principles into everyday practice (NIHR, 2013).

Learning and development

Research staff need appropriate training for their roles, such as certified GCP and informed consent courses (see tinyurl.com/NIHR-GCP-page).

The ethical principles covered in these courses should be accessible not only to research staff but also to all healthcare workers. The ethical principles and quality standards contained in GCP should also be introduced into undergraduate research modules.

Clinical research nurses have played an important role in the development of high-quality and accessible training opportunities, and have also developed a widely used competency framework (Royal College of Nursing, 2011). There are also now more opportunities for students to experience a research placement as part of their studies.

Trust and transparency

Our patients are also increasingly aware of their rights, and their expectations of healthcare and of research are steadily growing. Respect should be free of condescension and hierarchy and built on mutual trust and transparency.

Another aspect of compassionate care is courage. This includes courage to discuss research options with patients who may have a life-limiting condition or who have been involved in a recent trauma, courage to change and continuously improve standards of research delivery and practice, and courage to challenge and help colleagues understand the role and value of clinical research as a frontline service in our NHS.

The future

Over time there will be huge changes to the way that we do clinical research. As our technology advances, we will undoubtedly gain new understanding and be able to perform currently undreamt-of experiments in relation to genes and DNA. This work will help us to unravel the causes of some diseases and suggest new treatments for others, but will bring with it new and perhaps unique ethical challenges.

In addition, as technology progresses, so will our ability to analyse vast quantities of data to inform our medical knowledge. However, again, such possibilities pose problems in the form of privacy and data protection as we have seen most vividly in the recent concerns over the implementation of the NHS database, Care.data (Triggle, 2014).

In both these areas, we will need to ensure that our ethical responses keep pace with changes in technology, and that we develop new ways of approaching clinical research to ensure we are conducting our studies as ethically as possible.

Yet there is one certainty of which we can be sure - our clinical research will still involve people. Our research participants will still be individuals who have rights and dignity and who, above all, must be treated with respect. Similarly, no matter what the hospital of the future looks like or what possibilities for treatment may exist, we will still be caring for people.

Nurses, midwives and care staff will all be central players in medicine’s future and they should always apply the same key ethical principles to their practice - regardless of whether they are directly involved in research.

How we ensure our NHS workforce applies these principles is not straightforward but, if we keep respect at the heart of our practice, we will continue to build on the achievements so far for the benefit of patients, both now and in the future.

 

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