Barriers affecting adult women living with Dementia.
Research Ethics
Aims
To consider ethics and ways in which they have been developed
To provide some definitions
Consider the importance of ethics in terms of human services
To look at the importance of protection and the law
Consider ways in which organisations have developed ethics
Look at examples of ethical guidance
Why research ethics are important?
Ethics must be considered so that research is not a negative experience
The researcher must take responsibility for the experiences of participants
Participants must always know what their rights are / with emphasis upon the right to withdraw / not answer the question
The researcher should share this with the participants
Consider :What is "good” or "bad"
What is "acceptable" "worthwhile", "beneficial",
Or what might turn out to be "harmful"
and should be avoided
Defining Research Ethics
Ethics: ‘ The study of standards of conduct and values, and in research, how these impact on both the researcher and research subject’ (Gray, 2016)
Ethical Principles: ‘…refers to the moral norms that are basic for biomedical ethics. Ethics is a generic term for the various ways of understanding and examining moral life’
(Moule and Goodman 2009)
Development of Ethics
Early ethical discussion and the theory is embedded in philosophy
In this way it is fundamentally linked with what is considered right and wrong
Historically the development of ethical codes was influenced by the scandal of Nazi experiments during the second world war (Nuremberg code)
Ethics have been heavily influenced by research into health and medicine
From this University ethics committee has developed (O’Reilly and Kiyimba, 2015)
Ethics within human services
There are times when those who use services might be considered more vulnerable which means further attention to rights is needed
Consequently ethics must give full and clear consideration of the rights of individuals
The relationship between researchers and participants needs to be considered (insider)
Also the focus must be on the benefit of intervention and the well-being of the participant over any other area of discussion
(O’Reilly and Kiyimba, 2015)
Guidance & Standards
Written standards are set to help ensure best practice
“During the identification of the research problem it is important to identify a problem that will benefit individuals being studied” (Creswell, 2009)
Codes of ethics and guidance are to protect both researchers and participants and as such a researching organizations responsibility
No researcher has any right to demand access to information
Research can be intrusive so in is important to know where the boundaries are
Appreciation of Participants
The research process has the potential to empower participants / through giving a voice
Researcher have a responsibility to appreciate the participant:
Valuing the time given by an organization or a participant as they agree to be involved in your research is important
This means that part of the practice should be to offer clarity about expectations and time commitment from the start
This should include: Guidance about the process and involvement / the time it will take
Permission must be obtained at a very early stage and the right to withdraw should be clearly stated
There should be a very clear outline of how the information will be used and presented
When Participants right are not given consideration…
They will feel undervalued and out of control which is disempowering and unethically
How a participant feels reflects the potential to cause harm
Ethical considerations are extremely important where vulnerable groups are concerned
There must be consideration of what people are able to grasp / their understanding (informed consent)
The health & well-being of the person is always central which means there must be a careful person centered assessment throughout
Key Criteria to show ethical approach
Protection of rights: privacy & confidentiality should be maintained
Protection from harm
Positive contribution: In terms of knowledge & understanding.
Honesty & Integrity: To be truthful in method & behaviour
Ethical Codes and Guidance
Researching organisations are responsible for ensuring adherence to ethics
Any research undertaken in the name of an organisation must follow codes and guidance provided
These are reflective of good practice and a moral obligation
They must also be used in conjunction with the law / to uphold the rights of individuals
E.G Ethical Codes:
British Sociological Association (March 2002). https:// www.britsoc.co.uk/media/23902/statementofethicalpractice.pdf
British Psychological Association
https :// www.bps.org.uk/news-and-policy/bps-code-ethics-and-conduct
Data Protection Act 1998 and the General Data Protection Regulation (Regulation (EU) 2016/679) (GDPR)
Aware of the risks to anonymity, privacy and confidentiality
All kinds of personal information storage and processing, including computer and paper files, e-mail records, audio and videotapes
Aware of the kinds of personal information that will be collected / what will be done with it, and to whom it will be disclosed
‘Consent to process' may need to be obtained throughout (Checking)
Measures to prevent accidental breaches of confidentiality should be taken
In cases where confidentiality is threatened, relevant records should be destroyed
Provisions for data security at the end of a project must be made. Where the researcher leaves the University, this responsibility should usually rest with the relevant Department
https:// www.gov.uk/data-protection
https:// www.gov.uk/government/publications/guide-to-the-general-data-protection-regulation
Informed consent
A researcher must be able to show that participants have given consent
Informed consent depends upon the ability of the individual to give consent and as such linked with mental capacity
If a person is vulnerable this might mean that there is advice from those who know the person
The participant should be aware of the aim of the research and any risks which may be involved. This is not just related to physical risk but psychological and emotional
A short statement showing what the research is about should be given or read to the participant
Problems with Informed Consent and process consent as an option
There are times when obtaining informed consent is difficult.
For example, from adults with learning disabilities, or a person who is seen to not have mental capacity.
There will be times when people want to be involved and gain a voice through research
NHS has very strict restrictions around research ethics
Additional protocols including evidence of de-briefing would be required
Process consent places responsibility to ensure the participant is comfortable throughout the process and is based on the participant being able to withdraw from the research at any time
Further Issues
Participants should be provided with a detailed overview of their involvement and expectations
Assurance that privacy and confidentiality will be maintained should be given
This would mean that alternative names should be used to protect identity
Information should also be treated in a respectful manner
Covert studies cause additional pressures as this cannot be
checked with participants and is increasingly rare
University of Bolton Research Ethics
Each University has an obligation to ensure that any research uses clear guide lines
The guidance is based upon ethical principles and aimed at supporting the researcher and the individuals
The process must be followed:
The initial ethics should be discussed with the tutor / supervisor
The RE1 form should be completed, if supporting materials are to be used these should be included (E.G. Survey Questions)
If it relates to an area of practice managers letters should be shown
The form must be signed by the student / tutor or supervisor and then a member of the ethics committee
https://www.bolton.ac.uk/study/research/research-policies-documents/research-ethics-framework/