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Ethical Issues in research into alcohol and other drugs submission

ID: 
21
Personal Details
Organisation Name: 
National Centre in HIV Social Research, UNSW
C. Additional Information
Please identify the best term to describe the Organisation: 
University
General Comments
Comments: 

The National Centre in HIV Social Research (NCHSR) conducts research with people who use alcohol and other drugs (AOD) as part of its program of work in understanding the factors associated with the transmission and management of blood borne viruses and sexually transmitted infections. The use of AOD can have direct and indirect relationships with transmission of these infections. Further, our work with people who live with these infections or undergo treatment for them also brings us into contact with people who use AOD.  Our researchers are very experienced in conducting social and surveillance research with people who use AOD and our research is planned and conducted in cooperation with affected communities. As a group, we do not agree that this topic is sufficiently distinctive to require a guidance framework.

To that end, the argument for the need for a guidance framework is difficult to follow. The consultation document outlines that the use of alcohol and other drugs is undertaken by significant proportions of the population; only relatively small proportions of the population experience dependence on any particular drug. However, the slippage between alcohol and other drug use and dependence obscures the line of reasoning within this document. For example, section 3.2 is entitled "Causative factors for addiction to AOD in Australia". Yet, 3.22, 3.23 and 3.25 refer to AOD use rather than dependenceSection 3.2.4 does not refer to any level of drug use. One of the key issues in research in this field is to ensure that the language used in framing of research is as specific as possible to avoid blurring of results and potential stigmatising of participants.  Further section 3.2.6 focuses on the association between early AOD use and risk of dependence. This evidence may be available. However, this particular framing obscures the experience of the majority of the population, that is, most individuals use AOD in ways which do not lead to dependence.

Withdrawal from substances, payment and participation.

The suggestion that researchers should assess states of substance withdrawal would be an unacceptable and intrusive burden for the participant. Also, many who live with dependence on AOD also live with conditions of poverty. Could it be that poverty may unduly influence the decisions of people to participate in research (regardless of use of AOD)? Would the subsequent recommendation be that potential participants undergo a means and asset test, so that participation was limited only to those with sufficient financial resources not to be influenced by the offer of $20?  

 

Further, as the AIVL document outlines, it is patronising and insulting to people who use AOD that researchers (or HRECs) make assumptions about what such payments will be used for. We do not question payments made to people who are dependent on tobacco who participate in research or admit to illegal behaviours (such as driving above speed limit) - two of the conditions noted as prompting this consultation paper.

Models of addiction

This issue was noted as one of a number that prompted the development of this consultation paper (section 2.1.1 e). As there is no agreement in the scientific community, then it appears difficult to provide specific advice to HRECs concerning the issues affecting consent. In this situation, it appears that reliance on the existing NHMRC guidelines is appropriate.

Stigma

The consultation paper notes that use of AOD can be highly stigmatised. However, the AIVL statement aims to "encourage researchers and research institutes to honestly review the values and principles that they bring to the research process and to assess them in relation to their ethical implications". We believe that the call for a guidance framework needs similar reflection - that by calling for such a statement, NHMRC may indeed add to this stigma. By identifying people who use AOD as different, this positions these people as outside of the norm and again vulnerable to stigmatising responses. 

Online research and contingency management payments

These existing and continually emerging area of research activity has implications for all research, not only that done with people who use AOD. These issue should be addressed in a separate forum.

Legal risks

As noted in the AIVL document, the chance that research information would be used for police investigative purposes is very small. The legal obligations of researchers is an area that may require some further exploration, as in our experience, HRECs (particularly those who are not experienced in managing research with people who use AOD) can vary in their responses to these issues.

Protection of researchers

The issues raised here pertain also to other challenging areas of research and this should form part of a broader statement, and not be included in a specific (and potentially stigmatising) statement on research with people who use AOD.

Concluding statement

In our extensive experience in research with people who use AOD, the most useful support for the ethical conduct of research is our relationship with the affected community. This is noted in section 5.4.2 of the consultation document. Although the NHMRC principles of ethical research remain our benchmark, the operationalisation of these in each project occurs through discussion with people who use AOD and the organisations that represent them. In this way, we have sought to conduct our research in an ethical and respectful way.

In our experience, issues arise in research with people who use AOD within the HREC review process.  We have been associated with a project in which people who use AOD were requested to bring proof of the kilometres travelled to the research interview so that they could be reimbursed using the Australia Tax Office per kilometre rate. For those who walked to the interview or could not provide any such evidence (even a bus ticket), the HREC advice was that these participants should receive no payment. This appears to in contradiction of the National Statement on Ethical Conduct in Human Research (2007).

The most significant contribution the NHMRC could make in this area is to emphasise the importance of applying the National Statement to all areas of research and to encourage researchers to develop genuine relationships with the communities they seek to involve in research. It is via these relationships that the particular issues of the research topic and the people involved can be examined and the principles of the National Statement put into effect.

Page reviewed: 26 October, 2012