Ethics
The context 
In its widest sense ethics can be considered the application of morality aligned to a sense of duty. It can also be characterized by the quality of interpersonal conduct and the norms and standards used by professionals.
It therefore goes beyond the law to deal with the rights and wrongs of conduct. Ethical choices are a part of
the everyday world of research. From the first meeting to plan the work to the last reaction to any dissemination, ethical choices are being made every day on matters both large and small.
We need to consider ethics as research can have oppressive consequences.
The Belmont Report (1997) outlines the key ethical principles of beneficence and non-maleficence as fundamental to all research activity. ‘Beneficence is the requirement to promote the interests and well being of others. It is the ethical principle of ‘doing good’ in the widest sense. Non-maleficence is the principle of ‘not doing harm’. Both principles must be applied to all entities directly or indirectly affected by the research. In practice these principles frequently conflict, for example as in animal versus human welfare’. (Northumbria University Ethics Statement, Section 2.3).
All research projects conducted with service users and carers within the NHS require ethical approval through the National Research Ethics Service Research Ethics Committees (REC). The REC is fundamentally concerned with protecting participants from harm. They block unnecessary and dangerous research. The REC using the Mental Capacity Act 2005 intends to serve patients, service users, carers, prisoners, drug users and other ‘vulnerable’ people who lack capacity to consent. Under the Mental Capacity Act 2005 an official professional assessment of mental capacity is not required as long as the fundamental criteria are met (section 3): ‘A person (P) lacks capacity in relation to a matter if at the material time P is unable to make a decision for themselves in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain and as a result is unable to:
- Understand information relevant to a decision
- Retain the information
- Use or weigh the information
- Communicate their decision (by any means)
In addition to the REC all research projects have to be assessed and approved by the relevant Trusts Research and Development Departments . Ethically issues need to be considered around the following:
- Research question
- Study design
- Sample
- Data collection
- Analysis
- Issues relating to participation
- Intellectual property
- Data storage and disposal
- Outputs
If you are interested in how we approached ethical issues within the project check out our tables of ethics below: (Ethical approval for the project was gained from the Newcastle and North Tyneside 2 Research Ethics Committee).
Delphi study collected data from stakeholders in 2 rounds of questionnaires in order to explore perceptions of care coordination and recovery.
- Sampling
- Invitation
- Information
- Informed Consent
- The research steering group constructed a purposeful sample.
- An email was sent inviting each participant to become involved, non response was taken as a refusal.
- The email explained the projects aims and objectives.
- A consent form was not required for a questionnaire study.
Face to face interviews with service users and carers on NHS premises. ‘Moderately’ structured interviews were conducted by service users and carers who had successfully undergone research training. The tool enabled the participants to tell stories of recovery and care coordination from their own experience.
- Sampling
- Invitation
- Information
- Informed Consent
- Payment
- Having gained approval from the Trust Caldicott Guardian the service user and carer sample was taken from the RiO database by a system analyst. This excluded service users who: were current inpatients, had an alert on the system indicating significant risk issues, or their consent to share information indicator set at no.
- A letter of invitation was sent (link to Service User Letter of Invitation Final Version 03.07.12)
- Information sheet were circulated (link to Service User Information Sheet Final Version 03.07.12).
- Consent forms were completed (link to Service User Consent Form Final Version 25.07.12).
- £10 was paid to both service users and carer researchers and participants.
Face to face interviews with professionals using a ‘minimally’ structured interview enabled the professionals to tell stories of recovery and care coordination from their practice. The projects principle investigator conducted the interviews on NHS premises.
- Sampling
- Invitation
- Information
- Informed Consent
- A purposeful sample was constructed by the research steering group.
- An email was sent inviting each professional to respond.
- Information sheet were circulated (link to Professional Information Sheet Final Version 01.04.11).
- Consent forms were completed (Professional Consent Form Final Version 18.10.11).
Ethical Challenges The original design and continued progression of the project faced ethical challenges between conducting emancipatory research and ethical requirements of the REC. This led us to a number of interesting questions:
- If a project is designed and led by service users and carers does it in some sense make it ‘better’ ethically or ‘more’ ethical?
- What problems are there in conceptualising mental health service users and carers as ‘vulnerable’?
- The contrast between risk averse, hierarchical, tightly structured ethical protocols and the continuously evolving, loosely structured, power sharing nature of emancipatory research can be a problematic one.
