Some one has recently commented asking me a really important question. He asked how I ensure the confidentiality of the girls I write about. I am very glad this topic was raised and I have decided to write a quick note for people to read who are interested in ethical considerations.
Originally, I went out to work with the street kids as part of my PhD research as a student at Birkbeck College, University of London. The University has its own ethics committee for whom I spent 7 months of 2011 writing and re writing an ethics proposal to convince them that I am able to carry out my research in an ethical manner and for them to grant me ethical approval to work with vulnerable children. This was a process that involved many questions to each submission and changes to plans which at the beginning were not as tight as they could be.
This part of my academic journey was to ensure I posed no harm (intentionally or unintentionally) to the children, those who work with them, myself, or the society that is hosting me. I needed to demonstrate that my research plan ensured I took active measures to protect the children and myself – other wise I was going to have to change my research altogether.
and to ensure this, I do the following:
1. Informed Consent: Make sure the girls I work with know EXACTLY what I am going to do with the information they give me. So I explain my research but I also tell them about the other media outlets and why I am sharing (to raise awareness, get help for them etc.). My interest, my intentions, and my use of data is explained to the girls EVERY TIME I speak with them as a group or individually.
2. The Right to Withdraw: At the start of every interview and every group therapy session I explain that I am recording the interview/session to tell their story and that at any point they want to tell me something that they do not want me to share, to tell me and I will not share it, and if they change their mind after I share it, I will delete it.
3. Support: I ensure that any time I speak with the children, the psychologist that has been working with them for over 6 years is on sight and will be for the next few hours should they need any emotional/mental support.
4. Confidentiality: On a locked away hard copy, I have written the girls real names and demographics and given each girl a pseudo name that I frequently change so that she is unidentifiable. I also change the location she is from, she is in and her age.
5. Training: I attended many ethics seminars and courses to ensure that I had the tools necessary to ensure I never compromise on the protection of the children while researching them.
6. Criminal Record Checks: An enhanced criminal records check was carried out on me before ethics approval was given.
After having working with the children for almost a year, I have become their friend and confident – this I had not planned. This has meant that a lot of the things they share, I do not share. What I write about, if you can imagine that, is just the surface of the stories. Neither did I plan the amazing response I got through social networking that has given the children an opportunity for getting help that they had not done before and it was only when I was able to be an avenue of help to the girls that I passed my own, personal ethics test… I made sure I was not using the girls to get a PhD and at this point I joined a group of academics who are trying to set up an initiative of re-humanizing academia and knowing, and celebrating research that is also activism at it’s core (we’re still very new though, we actually still don’t have a name! – but I will keep you updated on this!!)
Do write to me and let me know if there are any other concerns/queries you have with this topic and I am VERY happy to discuss them.
Below is the summary of the ethics guidelines I adhere to and a few links more if you would like to read this in more detail. Please let me know if you would like more information on my specific research
RESEARCH ETHICS GENERAL GUIDANCE
Ethical approval for all research. Ethical approval is required for all research which involves human participants. This includes research where there is no face-to-face interaction between researcher and participants (e.g., postal questionnaires, telephone interviews, and internet surveys).
Protection of participants. All researchers are obliged to protect the physical, social and psychological wellbeing of their participants, to preserve their dignity and rights, and to safeguard their anonymity and confidentiality.
Informed consent. Article 17 of the Protocol to the Convention on Human Rights in Biomedicine or Biomedical Research states: ‘No research on a person may be carried out without the informed, free, express, specific and documented consent of the person’. This places a legal obligation on researchers to obtain and record consent from participants or their guardians, on the basis of information that should be given to them before their participation begins.
No coercion. There should be no coercion in the recruitment of participants.
The right to withdraw. There is an obligation on participants to participate in research for which they have volunteered. Nevertheless, participants must be given the right to withdraw from any given research, at any time without penalty and without providing reason. Participants can also require that their data be withdrawn from the study.
Anonymity and confidentiality. Participants must be assured that all information they give will be treated with the utmost confidentiality and that their anonymity will be respected at all times unless otherwise determined by law (for example, in the case of records maintained by the Prison Service). Where relevant, participants should be told about where information about them will be stored, who will have access to it, and what use will be made of it. Procedures for data storage must conform to the Data Protection Act. Express permission must be obtained for any non-confidential use of participant information. Express permission must also be obtained for access to specified information from confidential records, e.g. medical notes, or educational attainment records. Where relevant, any limitations to confidentiality (for example obligations under law, or where there may be a threat to self or others) must be explained.
Appropriate exclusion criteria. Recruitment of participants for a given study should apply exclusion criteria that protect the health and well being of participants (for example, exclusion on the grounds of psychological vulnerability or a pre-existing medical condition).
Monitoring. Researchers are obliged to monitor ongoing research for adverse effects on participants and to stop the research if there is cause for concern about their well-being.
Duty of care. There is a duty of care on researchers to ameliorate any adverse effects of their research on participants (either personally or by referral to an appropriately qualified person). As a general rule, researchers should debrief participants at the end of the research either verbally or in writing.
Additional safeguards for research with vulnerable populations. Special safeguards need to be in place for research with vulnerable populations. Vulnerable populations include schoolchildren, people with learning or communication difficulties, patients in hospital or people under the care of social services, people in custody or on probation, and people engaged in illegal activities, such as drug abuse.
For example, research with vulnerable populations may require Criminal Records Bureau clearance; research with schoolchildren also requires that parents or guardians be informed about the nature of the study and the option to withdraw their child from the study if they so wish.
Appropriate supervision. Student investigators must be under the supervision of a member of Academic Staff. It is the supervisor’s responsibility to ensure that the student is aware of relevant Guidelines and of the need to observe them.
How to obtain informed consent: In order that consent be ‘informed’, consent forms may need to be accompanied by an information sheet for participants setting out information about the proposed study (in clear and simple terms) along with details about the investigators and how they can be contacted. If applicable, this sheet may also make reference to any screening procedures, the confidentiality of the data, any risks involved, and any other points which participants might reasonably expect to know in order to make an informed decision about whether they wish to participate, and which are not included on the informed consent form.
A checklist of points on the informed consent form that participants are expected to sign might typically include: (a) That their participation is voluntary, (b) That they are aware of what their participation involves, (c) That they are aware of any potential risks (if there are any), (d) That all their questions concerning the study have been satisfactorily answered. Documented consent may be signed or initialled (if participants wish to maintain anonymity). In situations where information about the research and participant consent is conveyed verbally, it is recommended that the information be recorded on and read from or cued by a written information sheet; verbal consent should also be taped in order to provide a record.
Added safeguards may be required to obtain informed consent with vulnerable populations. For example, research with children in schools cannot take place without the permission of the head teacher and teacher responsible for the children. Where they are competent to give it, informed consent should also be obtained from the children themselves. In addition, parents or guardians should be given all relevant details of the study (in a letter) along with an opportunity to withdraw their child from the study if they so wish (passive consent). If the school requires it, parents may also be required to return signed consent forms (active consent).
This document is modified from the Guidelines for minimum standards of ethical approval in psychological research, British Psychological Society http://www.bps.org.uk/downloadfile.cfm?file_uuid=2B522636-1143-DFD0-7E3D-E2B3AEFCACDE&ext=pdf
Further detailed recommendations regarding ethical considerations can be found in the Statement of ethical Practice for the British Sociological Association