HUMAN RESEARCH ETHICS

INTRODUCTION TO RESEARCH ETHICS: ISSUES, GUIDELINES, PRINCIPLES AND VALUES

PART B:

CASE STUDY ONE: Consumer movements in mental health

A mature-age PhD student applies for ethical clearance for a project seeking an understanding of the development and rise of the consumer movement of people with mental health conditions in a region.

There will be 100 semi-structured interviews with people with mental health conditions, family members, advocates, paid and unpaid carers, bureaucrats and providers. It is proposed to show how the status quo has developed, what mistakes need to be corrected, and develop a model of best practice in consumer participation in health care decision making.

The researcher has 30 years involvement as a professional (psychologist) in the region, and having recently developed a mental health condition is keen to explore the other side. The researcher is semi-retired and proposes to use contacts derived via consumer and professional life in the region to do the interviews, which will touch upon the person's life experience, how they came to be involved in the mental health field and positive and negative experiences.

The proposal states that it will build upon recent efforts in the mental health arena to utilise consumer input and perspectives. The literature search has revealed that little has been documented of the effects of particular approaches which utilise the discourse of consumer input, and that is an arena of constant change. Providers and consumers alike seem to have engaged in little written evaluation of different models, approaches and activities in an environment where many are busy grappling with change and apparent lack of resources.

QUESTIONS

  1. If you were asked to be a co-researcher or to review this study, what would concern you and what would you want to know before you agreed or approved it?

The material that you have reviewed in Part A of this Module will assist you to identify matters such as:

  • the value of the research,
  • the fairness of the burdens of involvement and any benefits they will receive
  • whether the risks of involvement are justified by the expected benefits
  • whether the process of consent will be acceptable
  • how respect for the interests of participants will be shown.

You are encouraged to write your answers to this question in the box below. This is not a test but rather an opportunity to see whether the issues you identify are the same, in substance, as those that can be accessed by selecting the "Show Answer" tab below the box.

Matters that might concern participants or on which they would want information include:

  1. Will the sample of people selected as participants through the researcher's previous contacts be large enough and sufficiently representative to produce meaningful results?
  2. Will the sample of people selected as participants through the researcher's previous contacts impose an unfair burden of participation on them?
  3. Will the people interviewed have sufficient competence to understand and consent to be involved?
  4. What information will be provided to inform their consent?
  5. Will they feel coerced to agree to involvement because of their previous relationship with the researcher?
  6. Will the researcher's mental health condition impair his competence to conduct the interviews?
  7. Is the researcher's use of contacts a breach of privacy or confidentiality?
  8. Will interviewees be exposed to any harm or distress by the interview?
  9. Can a professional psychologist also be a researcher with the same people who were his clients?
  10. How will the research contribute to improvement of mental health services?

This is not a complete list and you may have thought of other issues in addition. The purpose was to commence reflection on the kind of issues that are typically included in research ethics.




  1. Why do you think that the answers you have given to question 1 are ethical issues?

You are encouraged to write your answers to this question in the box below. This is not a test but rather an opportunity to see whether the issues you identify are the same, in substance, as those that can be accessed by selecting the "Show Answer" tab below the box.

Many of the matters listed as answers to question 1 involve relationships between the researcher and research participants or potential participants in which the interests and welfare of participants is at risk unless care is taken. Ethics generally is about the way people live and thus the way that they relate to others and the effects that those relationships can have on others. The key relationship in research ethics is that between the researchers and the participants and it nearly always involves ethical considerations because it is nearly always unequal, that is, researchers usually have relatively more influence or status than participants who are thus often at risk of feeling persuaded to make decisions, such as agreeing to participate, as a result of that influence. Hence, research ethics is attentive the impact of that relationship.

The 10th issue listed above is a matter of ethics because the involvement of other human beings in research as participants needs to be justified as worth while. If research is poorly designed so that it cannot generate results that have meaning or validity, the involvement of those participants is wasteful and disrespectful of their humanity. Although there is a close relationship between this issue and issues of science or research design, the distinction between ethics and science needs to be maintained.