CREATE & MANAGE DATA
CONSENT & ETHICS
CONSENT / SPECIAL CONSENT
There are a number of exceptions to the general rules of informed consent, where special considerations are needed. Examples are research with patients, children, people with learning difficulties, asking about criminal matters and interviewing in the workplace.
- Medical research
- Children and young adults
- People with learning difficulties
- Research within organisations or in the workplace
- Crime
- Internet research
Where research involves medical matters, medical Research Ethics Committees will need to be involved and to approve the methodology and consent forms. The researcher should also be aware of the different standards traditionally asserted by such committees, some of which can conflict with those of social science research. Any conflicts need to be resolved as early as possible as these will have an impact on consent. All applications to research NHS patients are now done through a standard application form used by all NHS Research Ethics Committees across the UK. For further information see:
- NHS National Research Ethics Service application and support
- Medical Research Council Ethics and Research Guidance
As discussed in our section on consent forms, research participants must be provided with full information about the research in order to give their informed consent to take part. Careful thought needs to be given to translating this into practice when the participant is a child.
The Declaration of Helsinki refers specifically to medical research with children and states that when the subject is a minor, permission from the responsible relative replaces that of the subject in accordance with national legislation. Whenever the minor child is in fact able to give a consent, the minor's consent must be obtained in addition to the consent of the minor's legal guardian. The ethical guidelines of many professional organisations reflect this principle.
At what age can children legally give their consent to participate in a research project? In law, judgements concerning children giving their consent have been in relation to medical treatment. A child aged 16 years can give consent to surgical, medical or dental treatment as stated in the Family Law Reform Act 1969 ss.8 and 21. However, since 1985 the 'Gillick principle' has meant that with certain provisos a child under 16 years can give consent, without necessarily having his/her parent's consent. The case of Gillick v West Norfolk and Wisbech Area Health Authority (1985) established that "as a matter of law the parental right to determine whether or not their minor child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to understand fully what is proposed" (Lord Scarman). A later court ruling also states that a child's refusal to consent to medical treatment can be overridden by someone with parental responsibility and by the court, even if the child has sufficient understanding. Therefore a child under the age of 16 years who has sufficient understanding and intelligence has the right to consent to treatment but not to refuse it. The legal situation is far from clear, developing as it has on a case-by-case principle. Caution on the part of the researcher is important and in most cases it is advisable to seek the consent of the responsible adult in addition to that of the child.
A further consideration is the possible impact of the research on the child, at the time and at a later date. This will be particularly important in situations where the research involves discussing painful or difficult experiences. Good practice in all circumstances, but especially when children are involved, is for researchers, prior to interviewing, to gather information on local sources of support and have them available at the time of interview. Researchers should also recognise the limitations of their own expertise and resist giving advice and support beyond their area of competence.
Due to their legal status as a minor and the implied vulnerability that this status confers, the researcher often has to negotiate access to children via gatekeepers, who through their relationship with the child are assumed to have a protective role. The gatekeepers will require information about the research, how consent will be obtained from the children and responsible adults and the extent of confidentiality, prior to approving access to children. In other situations gatekeepers control physical access to children, such as in schools, where permission is needed to make the initial contact with parents. Again, in order to gain access to the children, researchers may be asked to make changes to their data collection instruments or to require parents to take positive action, i.e. elect for their child to 'opt in' to the research.
The clearest guidance on consent from children can be found in advice for clinical practice which presumes, based on a legal ruling, that young people aged 16 years and above can give their own consent. For younger children, a judgement must be made about their ability to understand what is being asked of them. Information must be given in clear language at a level that the child can understand, using visual aids if necessary. In this way they can be asked for their individual voluntary consent, in addition to that of a parent/guardian and/or the head teacher.
Similarly, confidentiality, anonymity and storage of data should be explained in a way that children can understand. It should also be made clear who will have access to the information and what will happen to it when the research is complete. Information can be given about how data will be used, in the same clear language as used about the research. It is recommended that written information should always be provided for the child and responsible adult, including a contact telephone number, should they wish to contact the researchers.
For further information see:
- UK Data Archive example consent form for a project requiring the participation of children
- Heath, S. Charles, V. Crow, G. and Wileshildren, R. (2007) ' Informed Consent, Gatekeepers and Go-Betweens: Negotiating Consent in Child- and Youth-Orientated Institutions' in British Educational Research Journal, Vol. 33, No. 3 (Jun., 2007), pp. 403-417
- Wiles, R., Crow, G. and Heath, S. (2007) 'Informed consent and the research process: following rules or striking balances?' in Sociological Research Online, 12(2)
- Alderson, P. and Morrow, V. (2004) Ethics, social research and consulting with children and young people, Ilford: Barnardos
- National Children's Bureau Research guidelines
- Department of Health (2001) Seeking consent: working with children
- Masson, J. (2004) 'The legal context' in S. Fraser et al. (eds.) Doing research with children and young people, London: Sage
People with learning difficulties
Research with people who have learning difficulties raises questions of ownership, power and exploitation which reflect the ethical concerns of much general research but which can be more problematic and therefore need special consideration. Revealing sensitive material in the records, or the stirring of painful memories of the past during interviews also raises another ethical issue about the need to provide support for those who are involved in this type of research. Extra time needs to be built into the project for these concerns.
Particular attention should be paid to discussion of the purpose and implications of the research and to ensuring that these have been understood. The use of any documentation or consent form needs to be appropriate, recognising adult status, but at the same time being accessible. Careful attention should be paid to the use of language. Cartoons or drawings run the risk of being patronising, whereas appropriate photographs or diagrams combined with clear statements in large print and double spacing can create an attractive and informative form to be referred to by the participants. One way of enabling people to understand as clearly as possible the implications of their named participation in research is to discuss with them who is likely to read the published research, and who will have access to the archived material. Examples of such literature can be shown and discussed. Books are significant and powerful examples of the public realm even for those who cannot read.
In cases where the researcher finds it difficult to understand the participant, it is important to find an interpreter i.e. a friend, relation, or long-term carer.
Research within organisations or in the workplace
Research with people within an organisation or workplace will need additional consent if work is to be discussed. Information given by an employee in an interview which takes place during the course of employment (typically on the work premises) should not be used unless the employer has given consent. This is because employees may be seen to owe a duty of confidentiality to their employer. Indeed employment contracts may contain confidentiality clauses. It is always advisable when carrying out research with someone in the workplace, in working hours, to discuss whether consent from employers is necessary. It is the responsibility of the researcher to be aware of the policy of each organisation.
For further information see:
- UK Data Archive example consent form for use with interviews in the workplace
Research into crime requires a different form of consent. Participants should be made aware that a researcher may under some circumstances need to disclose information relating to criminal activity. Normally, there is no legal obligation to disclose information relating to criminal activity - unless legal proceedings or an investigation are underway. Even then, confidants will only be guilty of perverting the course of justice if they deliberately evade questioning. They are therefore unlikely to be under a legal duty to disclose unless actually approached by the police with regard to the specific information or case in question.
For further information see:
- British Society of Criminology Code of Ethics for Researchers in the Field of Criminology
Increasingly, projects may gather data from online discussion groups, blogs or websites. The question must be asked as to who can provide consent - the individual respondent, the moderator or the webmaster?
As these are relatively new data collection methods, there are, as yet, no absolute answers. Permission from the webmaster or copyright owner should be sought if text from a (public) web page is required for research purposes, mainly for copyright reasons.
If information is taken from a restricted environment where members contribute information (chat room, forum, discussion group), general ethical practice would suggest that the researcher should inform and seek consent from each individual providing information and show that this has been obtained.
The British Sociological Association (BSA) Statement of Ethical Practice urges caution in internet research as ethical standards for internet research are not well developed as yet.
For further information see:
- BSA Statement of Ethical Practice
- Information Commissioner's Office advice on data protection
- MRS Internet research guidelines
- Association of Internet Researchers - Ethics Guide
- Exploring online research methods
