Ethical considerations should be of prime importance when attempting any form of research, evaluation or consultation and it is important to be aware of and sensitive to potential issues of ethical concern.
Many organisations have developed clear and thorough ethical principles to guide evaluation activities. These principles should act as a guide throughout the process to protect your organisations as well as participants.
The trust follows the Ethical Guidelines of the Social Research Association. However, other organisations will have their own ethical guidelines and may have committees who must approve any research on ethical grounds before it begins.
Never bypass ethical protocols that are designed to protect participants: the well-being of participants must be your overriding concern. Neglect of ethical considerations will not only put your participants and yourself at risk, it will fundamentally undermine the credibility of your evaluation process and findings.
If your evaluation includes children or young people, or anyone with impaired learning or cognitive ability, it is important that you consider if you need to get consent from a parent, carer, guardian or othergatekeeper. It might be necessary for those working in this field to undergo checks prior to conducting research. In 2011 the Scottish Government introduced a new scheme – the Protecting Vulnerable Groups (PVG Scheme) – for people who work with vulnerable groups and can provide guidance on this.
Consent is a central element of all evaluation activity and refers to the process of participants receiving as much information about the research as possible and then making an informed choice to participate. In most cases you should provide information sheets (King's College London provide some useful tips) and consent forms (the Health Research Authority give some useful examples and templates) to participants in accessible formats. These should explain the purpose of the research in clear, non-technical language and answer any obvious questions they may have.
Once the participant has read and understood the implications of taking part, if willing, they can complete the consent form. If an individual is unable to consent directly a representative may be able to do this on their behalf. It is important that potential participants are made aware that they are under no obligation to participate and can withdraw from the process at any time. This includes withdrawing any information that they may have provided previously.
The consent process should also make clear that participation will be confidential and anonymous. Additionally, if information gathering continues for an extended period or changes significantly, it may be appropriate to revisit consent (known as staged or negotiated consent). Essentially this process ensures that participants are still willing to be involved after a prolonged period or if there are changes in the research.
Additional consent will need to be obtained if you are using audio or visual (including video) recordings. If you are going to be photographing or doing an audio or visual recording, your participants must be aware of this and consent to be recorded in this way. You will also need to think about what ways these recordings, videos, or pictures may be used in the future. If you will want to use them in a promotional video, on the website, or on social media, you will need to obtain explicit consent for that as well. Your participants may have previously consented to have their photographs used for promotional purposes. However, for any new research or any new activity being done, you should always obtain consent for that particular use, since the context will be different than what your participants may have previously agreed to.
Harm and risk
It is important to think as carefully as possible about the potential risk to your participants when gathering information. It is not possible to fully anticipate the chance of harm in all situations, but you must do your best to take reasonable steps to ensure that the risk to participants is minimised as much as possible. Possible risks may include a range of mental and/or physical harm (e.g. anxiety and stress, general distress, loss of self-esteem). You must also think about the harm that might be caused if participants are identifiable. If your study involves questioning participants about sensitive topics, you should always arrange some information or access to sources of further counselling or advisory support.
Confidentiality and anonymity
Researchers need to ensure that information and records about individual participants are kept confidential and the identity of individuals remains anonymous. It is particularly important that in published materials individuals are not identified nor can they be identified by references to, for example, a town or an event, unless they give their consent to this. It is quite acceptable to change the names of people and places to maintain anonymity.
Protecting personal information
It is important that personal information relating to participants is stored safely. Traditional forms of data may include completed questionnaires and notes made by the information collector that include participant identifiers; these should be stored safely in locked drawers or cabinets. Other forms of data may be electronic files, such as word documents, photographs, videos, or digital recordings of interviews or focus groups. The safe storage of electronic files usually involves encryption and password protection. For highly sensitive information regarding vulnerable groups, you may want to keep your electronic files on an external hard drive that remains in a locked drawer or cabinet. Further considerations about Storing Information are provided in helpful guidance produced by Evaluation Support Scotland.
- Social Research Association (SRA), Ethical Guidelines
- United Kingdom Evaluation Society (UKES), Guidelines for Good Practice in Evaluation
- Evaluation Support Scotland guide to Storing Information
- Information Commissioner’s Office for Scotland provides information for organisations related to Data Protection
- The Health Research Authority provides guidance and examples of tools that can be used for gaining consent.
- Read further information on preparing information sheets for participants.
- The Scottish Government Protecting Vulnerable Groups (PVG Scheme) for organisations working with vulnerable groups. More information regarding the ethics of working with people affected by dementia and care experienced young people can be found in the next two sections.