Research by Government Reform Bodies involving Vulnerable People and Populations

Ethics Training Day: Dealing with Vulnerability

Princeton Room, Bond University, 14 University Drive, Robina, Qld
 

Introduction

I represent an organisation that works extensively with people who can be part of “vulnerable populations”. My background is as a human rights lawyer. While human rights and human ethics are not the same thing, there are some important cross-overs in how we work.

I want to reflect on some of the particular ethical challenges encountered by the Commission in its work with vulnerable populations and the strategies we adopt to meet these challenges.

In doing so, I hope to give a sense of the Commission’s work and the ethical issues that we confront in our work. As professionals who are expert in applying ethical considerations, your role is similar to ours at the Commission. That is, you and we both strive for a balance and accommodation between two impulses. The first is a legitimate concern to benefit the community. The second is the primacy of protecting the dignity of each individual member of the community.

Much of the time, there is no competition between these two impulses because the interests of individuals mostly align with those of their community or group. Ethical and human rights issues most frequently arise when, instead of a perfect alignment, there is friction or tension between these two impulses.

Clearly, we cannot ignore that friction, and we should be wary about allowing one impulse to completely swamp the other.

But neither should we should fear this scenario. Finding an appropriate, principled accommodation between concern for the individual and concern for the group is often vital to making important progress for both the individual and the group. This is why our work – and yours – matters.

Research by government reform bodies

‘Research’ is defined by the Australian Code for the Responsible Conduct of Research to mean ‘original investigation undertaken to gain knowledge, understanding and insight’.[i]  ‘Human research is research that is conducted with or about people, or their data or tissue’.[ii]
While people most commonly associate research with universities or perhaps government bodies such as the Commonwealth Scientific and Industrial Research Organisation (CSIRO) or Australian Bureau of Statistics (ABS), this barely scratches the surface of the research activities conducted in Australia, not least by government departments and independent statutory authorities, such as the Australian Human Rights Commission.
A number of Australian government departments and their state and territory counterparts have established their own Human Research Ethics Committees (HRECs) to provide guidance on the ethical dimensions of their research activities. Examples include:

• The Commonwealth Department of Health
• The Department of Defence and Veterans’ Affairs
• The Australian Institute of Aboriginal and Torres Strait Islander Studies
• The Australian Institute of Health and Welfare.

Research activities by government ‘reform’ or ‘review’ bodies

Australia’s federal, state and territory governments have established various independent statutory agencies that are sometimes described as ‘reform’ or ‘review’ bodies. By this, I mean bodies with a particular focus on reviewing Government activities, policies or laws by reference to particular standards and making recommendations for reform.
This can include law reform commissions, human rights and equal opportunity commissions, and royal commissions.
The activities and methods of each organisation vary due to a range of factors, including the law that governs the relevant body and the terms of reference of the particular review.
For example, the Australian Human Rights Commission has a variety of functions under the Australian Human Rights Commission Act 1986 (Cth), including to:

• inquire into and attempt to conciliate complaints of unlawful discrimination[iii]
• inquire into acts or practices that may be inconsistent with human rights [iv]
• undertake research on behalf of the Commonwealth to promote human rights.[v]

Generally speaking, however, the research undertaken by such organisations usually involves:

• desktop research and preliminary consultation to identify key issues
• production and release of consultation documents
• consultation, including written submissions and face-to-face consultations
• analysis of submissions and other research
• production of final report, incorporating submissions and research.

Do these activities constitute research?

As the NHMRC explains, ‘the term is used in a broad sense to refer to any set of procedures, activities, resources, policies and/or strategies designed to achieve some common goals or objectives’. Nevertheless, there remains some uncertainty about where the definitional lines should be drawn between ‘human research’ and work outside this ambit. As a result, there’s a wide variety of approaches taken among reform and review bodies in how they try to meet the necessary ethical standards.

It’s certainly important to acknowledge that little of the work undertaken by these bodies involves what we might consider ‘typical’ human research. It rarely, if ever, involves medical trials and while organisations like ours sometimes handle sensitive personal information, the risk of harm is usually low.

While this risk is low, it exists and can be higher in some important areas. This, coupled with the absence of a uniform approach in this area, probably increases the overall or net risk of some of our work.
It’s worth noting that none of the reform bodies I’ve referred to has its own HREC. That said, some state and territory law reform bodies – such as the ACT Law Reform Advisory Council, the South Australian Law Reform Institute and the Tasmanian Law Reform Institute – are affiliated with universities, and have, at times, sought review of their work by the university HRECs that they’re associated with.
Other organisations have developed their own principles based on a range of different sources, including legislation, policies and codes of conduct.
I’ll now turn to the approach taken by the Australian Human Rights Commission.

Research by the Commission involving vulnerable populations

As I mentioned earlier, the Commission has a number of functions relevant to human rights in Australia, including undertaking research to promote human rights and conducting inquiries into acts or practices that are inconsistent with human rights.
The challenges of distinguishing between research and monitoring and evaluation are particularly pronounced in the human rights field.
As Joseph Amon and other human rights and public health experts note, ‘the determination of whether a human rights investigation constitutes research can be contentious and may reflect differences in disciplinary training and professional development’.[vii] For example, in the health context, some international principles and guidelines on ethical research define research as something that develops ‘generalizable’ knowledge.  As Amon and others explain, ‘documentation of particular situations are not usually considered ‘generalizable’.[viii] Further, ‘[w]hile broader surveys of determining the prevalence of abuses may be considered research, in some cases they may be considered monitoring, which, again, is commonly exempt from review’.[ix]
I’ll now turn to some of these examples of the Commission’s work, the ethical challenges we’ve encountered in working with vulnerable participants, and the strategies we have adopted to meet these challenges in a human rights-based framework.

Examples of the Commission’s work with vulnerable populations

National inquiries

The Commission has conducted a number of major national inquiries since it was established, many focusing directly on the experience of vulnerable people and populations:

• Indigenous Deaths in Custody (1996)
• Stolen Children Inquiry (Bringing them Home) (1997)
• National Inquiry into Children in Immigration Detention (A Last Resort?) (2004)
• National Inquiry into Children in Immigration Detention (The Forgotten Children) (2014)
• National Inquiry into Employment Discrimination against Older Australians and Australians with a Disability (Willing to Work) (2016).

While the Commission doesn’t usually seek external review by a HREC for its national inquiries, the methodologies that underpin these projects and other substantial commission projects are underpinned by a number of core human rights and ethical principles. In particular, our research aims to be:

• comprehensive
• consultative and inclusive
• confidential
• evidence based
• voluntary.[x]

In addition, all of the Commission’s work is bound by our strict obligations to conduct our work ethically and protect personal information under Commonwealth legislation (including the Australian Human Rights Commission Act 1986, the Public Governance, Performance and Accountability Act 2013, the Public Service Act 1999 and the Privacy Act 1988). The Commission is also subject to regularly parliamentary scrutiny through Senate Estimates and other committee processes.

Detention inspections

Beyond major inquiries, the Commission undertakes other work that involves similar research-type methodology. For instance, the Commission has conducted inspections of immigration detention facilities in Australia since the mid-1990s.
The purpose of the Commission’s detention monitoring work is to ensure that Australia’s immigration detention system complies with our obligations under international human rights law.
In undertaking its detention facility inspections, the Commission gathers information through:

• Meetings with facility managers, including those with responsibility for security, service provision (e.g. food and activities), health care and case management
• A tour of the facility to inspect physical conditions of detention
• Interviews with people detained at the facility.

The interviews are crucial, because they provide the Commission with an opportunity to hear directly from people detained at the facility about conditions of detention, and how they are being treated by staff and other service providers.
However, the interviews also raise significant ethical concerns.
First, people are inherently vulnerable when in a place of detention. They are in a situation where:

• they have limited control over their lives
• staff are able to exert significant power over them
• they have a limited ability to protect their safety on their own initiative (e.g. they cannot choose where and with whom they are detained)

These factors may place people in detention at risk of retribution or victimisation if they raise concerns about conditions and treatment.
People who are seeking asylum may also be at significant risk of harm in their countries of origin, or have family members overseas who could be at risk of harm, if information about their situation is revealed.
To address these risks, the Commission seeks to ensure confidentiality of interviews by:

• Interviewing people privately, and never in the presence of staff
• Interviewing a sufficient sample of the detention population, to ensure that information cannot be traced to particular individuals
• De-identifying interview data prior to analysis and reporting information anonymously

These strategies are not perfect. Facility staff will still generally be aware of which people have spoken to the Commission, as staff are needed to escort people to interviews.
The second major issue that the Commission has to address in this work is that any people in immigration detention have experienced significant trauma. This may be related to:

• persecution, torture or mistreatment prior to arrival in Australia (commonly experienced by people seeking asylum)
• childhood abuse or neglect (experienced by some people who have subsequently been involved in criminal activity and had their visa cancelled as a result)
• mistreatment in the prison system (e.g. physical or sexual assault by other people in prison)
• treatment in detention itself (e.g. prolonged detention, separation from family, assault or other mistreatment)

Asking people for information about their experiences in detention can, in some cases, essentially mean asking them to relive their trauma.
To address this issue, the Commission seeks to ensure that people maintain a sense of control over the interview and are able to provide information on their own terms.
At the beginning of interviews, the Commission emphasises that the person does not have to answer any of our questions, and is free to leave at any time. This message is reiterated when discussing issues which may be distressing (e.g. mental health).
The Commission also limits its questioning to issues which are directly relevant to the purpose of our visit – to monitor conditions and treatment in detention.

Change the Course

These principles underpinned the Commission’s recent project on the nature, prevalence and reporting of sexual assault and sexual harassment at Australian universities.  The project was initiated at the request of Universities Australia, the peak body representing Australia’s university sector. The project was led, within the Commission, by my colleague Kate Jenkins, the Sex Discrimination Commissioner.
The findings and recommendations made in the final report are based on:

1. National University Student Survey on Sexual Assault and Harassment (the National Survey)
2. 1849 written submissions made to the Commission between August 2016 and December 2016.[xii]

In preparing the National Survey, the Commission was very conscious of the need to ensure:

• confidentiality and safety of participants
• survey participants were not caused further trauma
• participants were aware of available sources of help
• the survey was conducted on a voluntary basis.

Importantly, the Commission sought, and received, ethics approval for the National Survey from the UNSW Human Research Ethics Committee.
The Commission did not seek ethics review for the submissions component of the project. Kate Jenkins explained at the time:

Protecting the human rights of people with intersex variations

My last example is one that I flagged earlier: the Commission’s work to protect the human rights of people born with atypical hormonal and/or physical sex characteristics, also known as ‘intersex’ variations.
People with intersex variations in Australia and internationally have repeatedly raised concerns about human rights violations arising from non-consensual, medically unnecessary, medical interventions. The Commission has commenced a project to:

1. document and analyse existing approaches to medical interventions involving people with intersex variations / variations in sex characteristics in Australia and overseas
2. identify changes that should be made to these existing approaches, to ensure that decisions and processes regarding medical interventions involving people with intersex variations / variations in sex characteristics respect and protect the human rights of those affected.

To gather the relevant information, the Commission will:

•  survey people with intersex variations and medical practitioners about existing approaches to medical interventions
• call for written submissions
• conduct face-to-face meetings with a variety of stakeholders.

This is important work, and there are also many challenges and risks associated with it. For example:

• in asking people with intersex variations about their experiences or views of existing approaches, there is a risk that participants will experience harm or re-traumatisation;
• it is likely that some participants may wish to share highly personal and confidential medical information and records with the Commission; or that parents or carers will wish to divulge sensitive information about the people in their care;
• participants with intersex variations have incredibly diverse views about a range of issues, including identity, terminology and the merits or otherwise of medical interventions. There is a risk that we will not reach a sufficiently diverse range of voices.

This works sits in the grey area I mentioned before between research and evaluation; however, in light of these potential risks, the Commission has decided to seek external independent review of the project by a HREC.
HREC review is one very significant way in which we are seeking to protect the human rights of vulnerable participants; however, it is not the only way.
Another initiative is the establishment of an expert advisory group, consisting of prospective project participants, to inform the direction, methodologies and output of the work.
This component has a strong basis in the human rights principles of autonomy, consent, transparency, equality and non-discrimination.
Incorporating human rights principles into ethics considerations
This brings me to my concluding point. I’ve spoken a lot today about incorporating ethical considerations and principles into the Commission’s work.
At the same time, our work, and, in particular, the vulnerable population groups whose rights we seek to protect, benefit greatly from the incorporation of human rights principles in our research and projects.
This accords with the literature on protecting vulnerable populations in public health contexts, which increasingly recognises the role of international human rights law in providing ‘a solid foundation for ethical, inclusive research’.[xiv]
HREC members and researchers who apply these principles help to enhance the capacity of research not just to ‘deal with’ vulnerable populations, but also to protect their basic rights.

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1. Australian Government, Australian Code for the Responsible Conduct of Research (2007) 1 <https://www.nhmrc.gov.au/_files_nhmrc/file/publications/r39_australian_…; (viewed 22 September 2017).
2. Australian Government, National Statement on Ethical Conduct in Human Research (2015) 1 [5.1.24] <https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e72_nati…; (viewed 22 September 2017).
3. Australian Human Rights Commission Act 1986 (Cth) s 1(aa).
4. Australian Human Rights Commission Act 1986 (Cth) s 11(1)(f)(i).
5. Australian Human Rights Commission Act 1986 (Cth) s 11(h).
6. National Health and Medical Research Council, Ethical Considerations in Quality Assurance and Evaluation Activities (2014) <https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e111_eth…; (viewed 24 September 2017).
7. See, for example, Joseph J. Amon et al, ‘Human Rights Research and Ethics Review: Protecting Individuals or Protecting the State?’ (2012) 9(10) PLOS Medicine 1, 2.
8. See, for example, Council for International Organizations of Medical Science, International Ethical Guidelines for Health-related Research Involving Humans (2016) xii <https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines…; (viewed 27 September 2017).
9. Joseph J. Amon et al, ‘Human Rights Research and Ethics Review: Protecting Individuals or Protecting the State?’ (2012) 9(10) PLOS Medicine 1, 2.
10. See, for example, Australian Human Rights Commission, Willing to Work: National Inquiry into Employment Discrimination Against Older Australians and Australians with a Disability (2016) 25 < http://www.humanrights.gov.au/sites/default/files/document/publication/…; (viewed 27 September 2017); Australian Human Rights Commission 25, Change the Course: National Report on Sexual Assault and Sexual Harassment (2017) 24 <https://www.humanrights.gov.au/sites/default/files/document/publication…; (viewed 25 September 2017).
11. Australian Human Rights Commission 25, Change the Course: National Report on Sexual Assault and Sexual Harassment (2017) 24 <https://www.humanrights.gov.au/sites/default/files/document/publication…; (viewed 25 September 2017).
12. Australian Human Rights Commission 25, Change the Course: National Report on Sexual Assault and Sexual Harassment (2017) 22-24 <https://www.humanrights.gov.au/sites/default/files/document/publication…; (viewed 25 September 2017).
13. Kate Jenkins, ‘University Sexual Assault Project Will See Results for Students’ The Sydney Morning Herald (Sydney) 5 April 2017 <http://www.smh.com.au/comment/sexual-assault-project-is-committed-to-re…; (viewed 28 September 2017).
14. Jo Durham, Claire E Brolan and Bryan Mukandi, ‘The Convention on the Rights of Persons With Disabilities: A Foundation for Ethical Disability and Health Research in Developing Countries’ (2014) 104(11) American Journal of Public Health 2037, 2041.