HUMAN RESEARCH ETHICS

HUMAN RESEARCH ETHICS: JUSTICE

PART B:

CASE STUDY: An Opportunity To Identify Ethical Issues Related To Justice

Read the following case study and answer the question that follows. This is not a test of your knowledge of research ethics - it is simply to give you the opportunity to say what you think are the ethical issues that relate to justice and to receive feedback on what you have said.

Recovery and Resilience

During the previous summer, extensive areas of Australian countryside and townships were ravaged by severe bushfires. It is predicted that more fires of at least the same if not greater ferocity will occur in future years. How citizens withstand and recover from such events and how they need to be assisted and supported in recovering from them is an urgent concern for relevant governments.

A relevant government agency has commissioned the Social and Community Research Centre (SCRC), associated with a public university, to conduct research about the experiences of people affected by the recent fires, especially about how they dealt with loss of family members, friends, property or businesses and what support systems they found to be of most value. The agency requires a report within six months and plans to use the report to develop improved support services to be used in future situations.

The research team discover that one of the five local government the areas affected, (Northern), had developed a comprehensive detailed database of people affected by the fires, including their contact details where they had been relocated because of their loss of homes or businesses. Many of these people have not been able to return to their employment and are still being supported by resources generated in response to the fires. Statistically, the researchers are advised that this would be a sufficiently large sample for the validity of their proposed study. They decide to recruit the people on this database and not seek others from other local government areas, with one exception.

Among the population to be recruited are many families with children of all ages, many of whom had been relocated. Because the schools these children had previously attended had been damaged or destroyed by the fires, the children are now attending new schools. The researchers propose to include as many children as possible in this study.

The one exception to confining the study population to the Northern database is to include the previous residents of a complex in the Western local government area called The Cottages. These were significantly damaged, although not totally destroyed in the fire. They housed men and women with intellectual disabilities ranging in severity from those requiring 24 hour care to mild mental disability. The residents had been evacuated to temporary accommodation in motels in nearby towns. The researchers intend to include as many of these residents as possible in the study.

The researchers also plan to conduct a survey of a sample of citizens of the State who did not live in areas affected by the fires. The aim of this survey is to gauge how people in typical situations approach and cope with the demands of ordinary life and what support systems or sources they usually rely on. These participants will be chosen at random from the State electoral roll.

All participants other than those surveyed will be asked to be interviewed about their experiences and how they are recovering from them and what support they have found helpful. The interview transcripts will be analysed to identify common themes and subjects and, in order to substantiate these preliminary findings, the researchers plan to conduct a number of focus groups to refine and clarify these apparently common issues.

The final report is planned to identify the primary support needs identified in the study. The government agency has indicated that, once it has reviewed the report, it will adapt its policies and advise the public accordingly.

QUESTIONS

If you were asked to be a co-researcher in this study or a member of an ethics review body reviewing this study, and needed to be satisfied that the project met the value and principle of justice, what would you want to know before you agreed to be part of the team or approved the study?

The material that you have reviewed in Part A of this Module will assist you to identify the ethical matters that relate to the value of justice.

You may well identify other matters of research ethics that relate to one or more of the other key values of the National Statement, but the focus of this Module is on justice.

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 related to justice that would be likely to concern co-researchers and human research ethics committee members include:

  1. Although statistically valid, is the confinement of the research to the residents on the Northern database fair?
  2. How accessible are other potential participants, i.e. others affected by the fire who lived in other local government areas?
  3. Will any of those on the Northern database be suffering from such burdens as a result of dislocation after the fires that adding the burden of participation would be unfair?
  4. To what extent will the proposed participants receive or have access to the benefits of the study?
  5. Is the inclusion of children unfair to them? Why of why not?
  6. Is the inclusion of those people with intellectual or mental impairments unfair to them? Why or why not?
  7. Is the selection of the population to be surveyed fair to them?
  8. Is the plan for provision of the results of the study fair?