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Ethics – Consent

users in focus groups

How do you obtain people’s consent to participate?

Identifying people to engage with your design project and persuading them to participate is just the start of the process – a key ethical hurdle is to ensure you have obtained their informed consent.

What is informed consent?

Informed consent, also known as valid consent, entails giving sufficient information about the project and ensuring that there is no coercion so that prospective participants can make an informed and free decision on their possible involvement. The primary objective is to conduct research openly and without deception. Researchers have a primary duty to protect participants from physical and mental harm during the investigation.

Typically, the information should be provided in written form unless the participant requests it in another format.  Time should be allowed for them to consider their choices, and the forms should be signed by them to indicate consent.

Where participants are not legally responsible, their legal representatives or guardians should be consulted as well as the individual. Where participants are not literate, verbal consent may be obtained but wherever possible this should be witnessed and recorded.

In telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this should obtained.

In longitudinal research it may be necessary to explain the need for and limitations of enduring consent (link to Glossary of terms) ; it may also be necessary to re-negotiate consent during the lifetime of the project.

What information should be supplied?

The purpose of the consent procedure is to ensure that the participant has the necessary information to make a decision, and that the decision is freely made.

Potential participants should be:

  • Invited to participate in writing
  • Informed of the project’s purpose
  • Given details of what their participation will entail
  • Assured that they are under no obligation to participate
  • Given time to reflect
  • Assured that they may withdraw from the project at any time and their data destroyed, and that their withdrawal will be accepted without question
  • Represented by someone (such as a family member) well-placed to appreciate the participant’s reaction, as well as an objective and independent advisor, should the participant be unable to give consent owing to impairments in understanding or communication.

Download sample consent forms here

What does ‘voluntary participation free from any coercion’ mean?

Participants must be informed of their right to refuse to participate or withdraw from the project whenever and for whatever reason they wish. There should be no coercion to take part in the research. Adult research participants, however, may be given small monetary reimbursement for their time and expenses involved.

Out-of-pocket expenses and incentives

Participants should be reimbursed for any out-of-pocket expenses incurred such as transport costs. In the case of disabled or older participants, they should be allowed to travel to the venue by the transport method of their choice. Where visually impaired participants are concerned, it is helpful to arrange for participants to be reimbursed in cash for their transport on the day. Where the researcher requests information to be posted back by the participant, a self-addressed stamped envelope should be supplied.

Incentives such as book or store vouchers may be offered to encourage participation for non-commercial projects, but need not always be financial in nature.  For commercial projects, participants should be paid a mutually agreed fee for their services.

Where children are involved, it is often appropriate to acknowledge their help with gifts to participating schools and/or personal gifts, but anything that implies coercion is not appropriate.

Do participants have a right to withdraw consent?

In giving consent, participants have the right to withdraw consent or not to answer particular questions. The point at which data will have been anonymised and amalgamated and a date after which participants cannot withdraw consent or ask for data destruction should be indicated. If data is to be archived and shared, participants need, as far as possible, to give specific consent to this.

What if it is not possible to obtain informed consent?

Informed consent may be impracticable or meaningless in some research such as crowd behaviour. Covert research may be undertaken when it may provide unique forms of evidence or where overt observation might alter the phenomenon being studied. The broad principle should be that covert research is only justified if important issues are being addressed and if matters of social significance are likely to be discovered that cannot be uncovered in other ways.

How do you obtain consent from vulnerable people?

In most cases, researchers working with vulnerable people such as children under the age of 16, older persons or adults with learning difficulties (who fall under the remit of the Mental Capacity Act 2005), will need to be registered with the Independent Safeguarding Authority (ISA) which has links with the Criminal Records Bureau (CRB).

The CRB offers organisations a means to check the background of researchers to ensure that they do not have a history that would make them unsuitable for work involving children and vulnerable adults. The ISA ensures that the information is updated. In some cases other individuals (such as a head teacher or social services manager) may be better placed to provide information on necessary disclosures.

Every effort should be made to secure actively given informed consent from individual participants. Passive assent (including group assent with consent given by a gatekeeper) should be avoided wherever possible. Every effort should be made to develop methods of seeking consent that are appropriate to the groups being studied, using expert advice.

Research involving pregnant participants should only be undertaken if pregnancy is an essential part of the research.  Research into pregnancy and childbirth requires special consideration, as both mother and child are involved. Moreover, the rights and concerns of the father may need to be taken into account.

Mental Capacity Act (2005) | PDF | Website

For further details, see the Safeguarding Vulnerable Groups Act 2006; Rehabilitation of Offenders Act 1974; the Rehabilitation of Offenders Act 1974 (Exceptions Order 1975), and the British Psychological Society (BPS) Code of Research Ethics)

How do you obtain consent from children under the age of 16?

Young persons over the age of 16 are generally thought to be able to give informed consent but it might be appropriate to seek advice depending on the nature of the work.

In a situation where a child is capable of giving consent, the approval of a parent or guardian must still be obtained for any child under 16 years of age, who must be provided with sufficient information to enable them to provide informed consent. The identity (by name, relationship or role) of the responsible adult giving consent must be recorded and where the subject matter is potentially sensitive, consent should be obtained in writing.

Where it can only be provided verbally – for example, in telephone interviewing – the responsible adult should be sent written confirmation if requested. Consent must be obtained under the following circumstances:

  • In home/at home (face-to-face and telephone interviewing)
  • Group discussions/in-depth interviews
  • Where interviewer and child are alone together

Interviews with 14 and 15 year olds conducted in public places – such as in street or in store locations – may take place without consent if a parent or responsible adult is not accompanying the child. In these situations, an explanatory thank you note addressed to the parent or guardian must be given to the child.

Where research is being conducted in schools with the consent of the responsible adult, the researcher should suggest to the school that consent is also sought from parents or guardians for in-school interviews. Where consent is sought for some interviews in a school, it should normally be sought for all interviews, including those with young people.

Children should participate in research only if the same knowledge could not be gained from research using adults or where the research specifically addresses issues relating to juveniles.

Notwithstanding the fact that parental consent has been obtained, primary responsibility for safeguarding the rights of the child remains with the researcher.

How do you obtain consent from participants who fall under the Mental Capacity Act 2005?

In the case of projects involving adults who lack capacity under the terms of the 2005 Mental Capacity Act, researchers should assume that a person has capacity (unless there is proof that they do not have capacity to make a specific decision) and that potential participants must receive support to try to make their own decision.

The potential participant has the right to disagree with the decisions that others (such as relatives or carers) might make. If it is established that an adult does not have the capacity to decide whether to participate, the Act requires that the researcher must consult with a specified consultee as set out in the Guidance to the Act (2008). If possible, this should be a personal consultee such a family member or close friend of the person, but not a paid carer or other professional such as a social worker.

If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is someone who is prepared to be consulted by the researcher, but has no connection with the research project. That could be someone from a relevant organisation (such as a local church or charity), but could also be someone who knows the person in a professional capacity such as the person’s GP, social worker or carer, providing they have no connection with the research project.