HUMAN RESEARCH ETHICS

MODULE FIVE: RESPECT

PART B: A CASE STUDY
AN OPPORTUNITY TO IDENTIFY ETHICAL ISSUES RELATED TO RESPECT

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 respect and to receive feedback on what you have said.

Caring for the Forgotten

Between the 1930's and the 1970's, thousands of children, some from overseas and some from Australia, were re-located from their families into foster care institutions where many were mistreated. This population has come to be referred to as the forgotten Australians. It is known not to include Aboriginal and Torres Strait Islander people.

One of those institutions was the Children's Home. It was operated between 1950 and 1980 by the Foster Family Trust, a charitable organisation that was wound up in 1995.

The Behavioural Research Group (BRG) of an Australian university has been commissioned to conduct a research project to assess the degree to which any of the one-time residents of the Children's Home continue to suffer detrimental mental, psychological or emotional effects from their time in that facility. With the data from the research project, the BRG have been commissioned to advise on care and treatment programs that will address the needs of these people. The residents of the Children's Home are seen as broadly representative of the whole population of the forgotten Australians so that the government has indicated that it will fund the provision of the care and treatment programs recommended by the BRG, for all the forgotten Australians or make appropriate adjustments to the entitlement levels of those receiving public benefits.

The Foster Family Trust retained records of the names of all residents, of where they came form and to where they went when they left the Children's Home, of all medical treatment they received while in residence and of their behaviour and conduct. When the trust was wound up, all of these records were given to the Government. The government has used these records, together with a wide spread publicity campaign, to locate almost all of the surviving Children's Home residents so that all their contact details are recorded. Their ages range from 40 to 65.

All of these records are made available to the BRG who propose to examine the records to establish preliminary profiles of each of the survivors including the diagnosis of likely impairment, continuing conditions and of future treatment needs. The researchers do not propose to seek the consent of the survivors for this examination and use of the records.

With the profiles they have developed, the BRG proposes to then conduct a series of focus groups of the survivors. The focus groups are seen by the BRG as an important phase in which to introduce themselves to the survivors and begin to earn their trust. However, the researchers do not, at this stage, propose to disclose to those in the focus groups, all of whom will be identified, what the researchers have discovered about each of them from the records, that preliminary profiles have been developed nor that, during the focus groups, the researchers will be observing and analysing the behaviour of the focus group participants to add to their profiles and preliminary diagnoses.

Participants will be told that the focus groups are informal discussions of how they now live and what they remember about their time in the Children's Home and are a first phase in a research project aimed at assessing their on-going needs for support, care and treatment. They will also be told that the research will be used to develop future treatment, care and support programs that the government intends to fund, either directly, or by making adjustment in entitlement levels for those receiving public benefits. All who attend the focus groups will be paid travel and accommodation expenses.

Following the focus groups, all the survivors, whether they attended a focus group or not, will be invited to attend an interview with two members of the BRG team. They will be told that the interview will explore their personal history at the Children's Home and their life since then and their present state of health in all respects. They will be told that the interviews could be emotionally difficult and may take several hours, but that in the absence of an interview, it will be more difficult to identify the treatment, care or support program that will best suit them. The researchers propose to disclose to the interviewees all the information that has been collected about them from the records and, where relevant, from their attendance at a focus group and also any preliminary diagnosis.

Interviewees will also be asked if they will agree to data derived from their interview, from which all identifying details will have been removed, to be used in any future research about the forgotten Australians.

All interviewees will be offered $500.00 for attendance at an interview. They will be reminded of the overall goal of the project to inform the design and delivery of support, treatment and care programs for all of the forgotten Australians, not only those who were in the Children's Home.

QUESTION

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 respect, 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 respect.
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 respect.
You are encouraged to write down your answers to this question in the box below - but you don't have to. This is not a test but rather an opportunity to see whether the issues that you identify are the same, in substance, as those that are listed in the answer to the question revealed by clicking on the "Show Answer" tab.

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

  1. What is the justification for not seeking and waiving the need for consent to the researcher's use of the survivors' records?
  2. How will the researchers establish the capacity of those invited to the focus groups?
  3. Will the information about the project, especially that it may lead to Government funded treatment or changes in benefit levels impair the voluntary choices of potential participants?
  4. What is the justification of not disclosing to focus group attendees that preliminary diagnoses have been reached about them?
  5. What is the justification of not disclosing to focus group attendees that the focus groups will be used for analysis and not only discussion?
  6. Will the offer of payment of travel and accommodation expense amount to an inducement to expose themselves to the risks of focus group participation?
  7. Will focus group participants be told that they will be identified?
  8. How will the consent to participate in focus groups be established?
  9. Will any of the information provided for consent to the interviews amount to unethical coercion or pressure?
  10. Is the request for use of non-identified data for future research an ethically justifiable use of unspecified consent?
  11. Will the offer of payment of $500.00 for interviews encourage participants to expose themselves to risks they might otherwise have avoided?