4.1 Concepts to support researchers and participants
There are some key concepts, which have entered into our language and in some cases into legal frameworks, that guide the way society behaves. The terms permission, consent and assent capture how we should behave towards one another to show our respect to act freely. As researchers, we need to embrace and enact these concepts as part of our research activities, with additional responsibilities (drawn originally from biomedical research) about gaining informed consent from potential participants to be confident they understand what is being asked of them before agreeing to participate.
There are some key concepts, which have entered into our language and in some cases into legal frameworks, that guide the way society behaves. The terms permission, consent and assent capture how we should behave towards everyone involved in research. By attending to these concepts we demonstrate our respect to those in research settings hosting the research and/or introducing us to potential participants. Simultaneously we encourage and empower participants to act freely in the research environment. Furthermore, we need to embrace and enact these concepts, including additional responsibilities (drawn originally from biomedical research) about gaining and maintaining participants’ informed consent. This is to be confident that potential participants understand what is being asked of them before agreeing to participate, and checking that this consent is maintained throughout their research experience. Gaining ongoing consent is importantly about recognising that participants’ perspectives and situations can change for a range of legitimate reasons.
Activity 6 Distinguishing permission from consent/assent and ensuring ongoing informed consent/assent
Part A
Consider the following definitions:
Permission
If you give someone approval to do something, you are giving them permission. Think of the permission slip your parents sign to let you go on a field trip––they are approving your going on the trip. Permission has the same Latin root word as permit.
In research ‘permission’ generally refers to gatekeepers and/or research-setting leaders of host organisations who are able to introduce researchers to individuals or groups of potential participants in their care. In doing so, gatekeepers demonstrate that they trust the researchers, which can encourage people to participate. This can be invaluable to the researcher. Simultaneously, not to approach a gatekeeper/host before approaching participants of a group can be disruptive for a group’s activities, wrong-foot group leaders and undermine their confidence in the research/researcher.
Consent
Consent can only be given ‘if he(sic) agrees by choice, and has the freedom and capacity to make that choice’. ... Whether a complainant had the capacity (i.e. the age and understanding) to make a choice’ – as worded as the statutory definition of consent in the UK (Section 74 of the rape and sexual offences legislation].
In research, consent and assent generally refer to potential participants agreeing to take part in research.
Informed consent
Consent [for example] by a patient to undergo a medical or surgical treatment or to participate in an experiment after the patient understands the risks involved.
Informed consent in research emphasises the importance of a) participants being provided the fullest appropriate information, and b) that the researcher has ensured, as far as is possible, that participants have understood that information before seeking their ‘informed’ consent/assent. Ensuring understanding is of particular importance where information is difficult to understand, e.g. in the case of potential outcomes or risks of medical procedures, or when the potential participants have special needs to help them understand information. This could be because they are a child and do not have the life experience to understand aspects of research, or it could be an adult with special learning needs. It is always the responsibility of the researcher to present information in a way the potential participant is most able to understand.
Assent
Assent is the expression of approval or agreement [such as] ‘a loud murmur of assent’ or ‘he nodded assent’.
Assent is usually what is sought from those unable legally to give consent. This includes children and young people under the legal age of consent (technically minors) and other vulnerable populations who are considered unable to readily comprehend the requests of them – a legal guardian or responsible adult would need to be asked for consent on their behalf.
Nonetheless it remains important for the potential participant to be consulted and their ongoing informed consent secured. Often assent to support a potential participant’s carer consent is used where the participant is unable to express or signal their agreement in standard ways. Researchers should always work with their legal guardians / responsible adults to satisfy those involved that the potential participant is assenting. This might be, for instance, by the responsible adult being able to read body language.
Seeking assent is an important part of a researcher’s responsibilities to support children’s rights under the UN Convention of the Rights of the Child. This was established in 1989, and came into force in the UK in 1992 (UNICEF, 2019). In particular, the UNCRC states under article 12 that
Every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously.
There are other special population groups (such as those with special learning needs) and particularly complex research topics (such as medical research) which raise challenges in securing informed consent/assent. Advice is available from specialist organisations who understand the needs of participants, e.g. this summary poster for good practice from the Learning Disability Health Facilitation Team and this NHS page about consent to treatment.
Each follows very similar principles which define valid consent/assent as that which is given voluntarily, by someone who is fully informed and has capability to understand the information given to inform them about the research.
Ongoing informed consent/assent
Consent and assent is not simply sought at the start of a research project, evidenced in signed consent forms and then forgotten. The researcher should remain alert throughout their work to positive signs of consent/assent throughout their work with participants. Often as research studies progress the participants will understand more about the study. Initial information provided will make more sense.
A reflexive researcher, constantly reviews the impact of day-to-day research interactions upon their participants and others involved. Planning a reflexive approach to research will help support participants ongoing informed consent/assent.
Visit this Our Voices page about Reflexivity at the heart of ethical research. This advice is primarily designed for research about, with, and by children and young people, but the principles are widely applicable.
Consider Case study 2.1 again in relation to the following questions:
Think about:
- Who would the researchers have to initially ask for permission to access the setting?
- Who would the researchers have approached for consent?
- Who would the researchers have approached for assent?
- How would the researchers have evidenced informed consent and assent?
- How would the researchers have ensured the ongoing assent/consent of their participants?
Part B
What is involved in gaining informed consent/assent?
What is involved in retaining ongoing informed consent/assent?
The gatekeepers to this setting were likely to include the Ministry of Education, the regional education office and the headteacher of the school. If the school was funded or sponsored in some way, the leader of the partner organisation would also need to have been contacted. Consent would then need to be gained from individual class teachers and from the parents/carers/guardians of the children who would be observed. The children themselves should also have been asked to give their assent. How such consent was gained would need to take local recommendations into account, in order not to cause offence or disrespect. Those local recommendations could include local consideration of the age of majority. For instance in Scotland, young people can vote in Scottish Parliament elections and be considered sufficiently informed and able to give consent to taking part in research without parental consent. In other countries that might be a lot younger still.
Gatekeepers to research participants are likely to have provided written, formal permissions to approach potential participants in the school. Potential participants must still give specific informed consent/assent to be included in a research study, supported if required by parent/carer/guardian consent if minors. That consent/assent should be collected in a way that can be stored to provide a record that ensures appropriate contact with participants.
The notion of informed consent comes from biomedicine, but the principles are used much more widely in research with people. Watch the following short video and, as you do so, replace in your mind ‘doctor’ with ‘researcher’ and ‘patient’ with ‘research participant’.
The video entitled ‘Informed Consent: in a patient’s shoes’ is 2 minutes 49 seconds in duration and won the Royal College of Surgeons of Edinburgh skills video competition in 2017 (make sure to open this link in a new tab/window so you can easily return to this page).
Note down the strategies recommended at the end of the video as valuable principles to consider when a researcher is informing potential research participants about the research in which they would like them to participate.