It was great to welcome back Becky Case, Debbie Knight and Diane Hopkins for more on research ethics following their previous Research Bites session on the Ethics approval process at Lancaster University.
The ethical mindset
When considering ethics the first question researchers ask is: “Can I do X?” . The short answer is always: YES – if it is ethical. Is what you are trying to do morally justifiable for your research goals?
This question should be at the heart of every research proposal; the ethics committee are looking for an ethical mindset. Consider the following questions:
- Are you trying to do good and trying to avoid doing harm?
- How are you dealing with personal data that has been freely given?
- Are you respecting that data?
Conduct your research with an ethical mindset
Almost all ethical issues have to be dealt with on a case-by-case basis but there are some themes which are common to many research projects.
Anonymity vs confidentiality
There is sometimes confusion between what is meant by “anonymised” and “confidential”.
Asserting that data will be anonymised means that individuals cannot be identified from the data. You will be expected to anonymise data and make it clear to people what it is you are going to do. Bear in mind however that some data is hard/impossible to anonymise. Also be aware that there are some people do not want their data anonymised.
Confidential is a very difficult concept – people have different ideas about what this means. The lay person is likely to understand this as not sharing the data with anyone. This would preclude sharing the research in any way. The academic may understand confidentiality as capable of being shared with an academic audience or that the data can be shared if it is anonymous.
- There are limits to confidentiality as in some areas there might be a statutory obligation to report information, especially where there is a duty of care.
- Do not promise things which cannot be honoured.
- Ensure participants understand what is going to happen to their data – good communication is vital!
Researcher vs counsellor
There is a fundamental difference between being a researcher and being a counsellor.
When conducting interviews with people, ask yourself the question:
What would you do in the event that people become upset?
The natural human response is not always the correct ethical response – your role is as a researchers not a counsellor and this should not be undertaken unless you are qualified to do so. There is guidance available on safeguarding issues and you should be aware of these when dealing with potentially complex issues.
This is key to a good ethical approach. It can be written or verbal.
There are several considerations relating to participation/non-participation which need to be made explicit at the outset:
- What will happens to the and their data at the end of the project?
- What happens if the participant changes their minds about taking part in the project?
- What will happen to their data in this scenario?
You need to be able to show that you have considered all of this when planning your project and method of gathering data eg via forms, tick boxes etc.
Paying for participation
Paying people for participation is acceptable depending on the circumstances. It is reasonable to pay travel expenses or as a thank you but it must not be used coercively. For example if a person decides to withdraw from the project they cannot be “threatened” with non-payment.
Bear in mind:
- the effect of payment on benefit claimants.
- working overseas a small amount of money here can be a significant sum.
Assessing vulnerability is not always easy – some people may be vulnerable at certain times and not at others. Focus on capacity to consent.
Vulnerable vs non-vulnerable
You do not necessarily need parental consent for children to take part but it is vital that no-one, child or adult, is coerced into taking part in research. Often the context in which the research takes place is key – children in a classroom. a dementia sufferer with their family etc.
Determining capacity to consent
The ethics committee will be looking for a description of how you are going to determine capacity to consent. Do not make claims involving clinical judgements about people if you are not qualified or able to make them. Do not assume consent to take part is a one-off process and it must be easy for participants to withdraw if they change their mind.
This should be balanced against the need to widen participation in research. Because of perceptions of vulnerability certain groups eg those with disabilities are often excluded from research. This negatively affects outcomes and participation.
There are templates for consent forms if you are having trouble getting started on lots of help available on the sorts of things you should be putting on the consent form.
The consent form is vital and protects the researcher as much as the participant.
There were various questions raised after the presentation including around
- Retrospective ethical approval
- Research with children as participants
- The role of researcher vs teacher
- The use of human tissue samples
Ethics is not about getting in the way of research its about informing and facilitating!