Ethical research with refugees and asylum seekers – it’s about processes, power and politics…

On a rainy September evening, in the week following the Australian federal election, colleagues and I from the University of Melbourne group Researchers for Asylum Seekers (RAS http://www.ras.unimelb.edu.au/ ) convened a panel discussion to launch our edited book Values and Vulnerabilities: The Ethics of Research with Refugees and Asylum Seekers. The ensuing lively discussion, between approximately 40 audience members and the panel – comprising four of the book’s contributing authors, fairly quickly turned to politics. Given the timing of the event, and the prominence of debates concerning asylum seekers within the election campaign, this was perhaps hardly surprising. What may not be immediately obvious though is the close link between research ethics and politics and this is what I would like to discuss here.

Book launch KB

Opening the book launch

Ethical challenges

We can think of research ethics as being underscored by core principles, which include non-maleficence (do no harm!); beneficence (do good!); respect for autonomy; and promotion of justice. Clearly, research with refugees and asylum seekers, often rendered particularly vulnerable both to harms and threats to their autonomy by the circumstances in which they find themselves, raises ethical challenges for researchers. Consequently, university-based ethics committees are likely to pay very close attention to any research that is proposed. Potential harms must be avoided or at least minimised and balanced against likely benefits of the research. Researchers must also attempt to make sure that consent to participate is truly ‘informed’. Key considerations include language differences; potential lack of experience or understanding of research on the part of participants; and misconceptions that participants may have about their right to refuse without compromising their positions. Researchers and ethics committees may also be concerned that refugee research participants could overestimate the extent of the benefits to be obtained through participation.

Research ethics committees typically pay less attention to promotion of social justice, although clearly, –  as a general rule – research should aim to reduce rather than increase social inequalities and inequities. Yet researchers undertaking research with refugees and asylum seekers are frequently driven primarily by a commitment to social justice and, in the politically charged environment in which much refugee research takes place, need to consider the political ramifications of their endeavours. For researchers to behave in an ethical way in such an environment, they need to think beyond the way in which their research is conducted and consider also the ways in which their research might be interpreted or used.

Let’s consider here just some of the issues that might arise:

Gaining access to research participants

Several of the authors who contributed chapters to the book discussed the ethical complications inherent in conducting research with asylum seekers within the Australian detention system. While documenting the suffering caused by this system is undoubtedly extremely important, such research is fraught with ethical complications. Are detainees, stripped of so many rights by their situation, really likely to understand that that they have the right to refuse to participate in research? How can researchers ensure that participants don’t mistakenly believe that somehow researchers – with their relatively powerful and privileged positions –   can help them with their asylum claims? What if gaining access to participants requires cooperation with oppressive authorities, thereby unintentionally legitimising the detention system that most refugee researchers almost certainly oppose?

The potential for research findings to be misused

Another issue raised by the panel was the potential for research findings to be stigmatising. If research shows that Australia’s detention system damages the mental health of detainees or drives them to commit desperate measures involving self-harm or violent protest, many would respond with compassion. Others however, might use such evidence to argue that acceptance of these asylum seekers and refugees imposes unwarranted risks and costs to Australian society.

The challenge of combining research with advocacy

For research to be trustworthy (and ethical!) it must be conducted with rigour and as much objectivity as possible. This can raise some thorny questions concerning the nexus between research and advocacy, and is discussed in the introduction to the book and touched on throughout. While those engaged in refugee research are invariably committed to improving the plight of those they study, others  have criticised so-called “advocacy research” which, they claim, often lacks appropriate rigour.

It is clear that we need to think through many issues and questions before, during, and after we conduct research involving potentially vulnerable participants. Perhaps an even greater concern for those participating in our panel discussion though, was how we can conduct research that has a positive influence on government policy in this area. If researchers have already shown that harsh detention policies cause significant harm, and have produced statistics showing that the number of people seeking asylum  in Australia is far smaller than in many parts of the world – then clearly we need new research questions. Should we instead be studying the most effective ways to influence public opinion? On the other hand, perhaps we have reached the limits of what research alone can hope to achieve…

Book launch editors (2)

Book editors – Nick Haslam, Karen Block, Elisha Riggs

For further information on the book Values and Vulnerabilities: The Ethics of Research with Refugees and Asylum Seekers see https://www.australianacademicpress.com.au/books/details/241/Values_and_Vulnerabilities_The_Ethics_of_Research_with_Refugees_and_Asylum_Seekers

Written by Dr Karen Block
Research Fellow, Jack Brockhoff Child Health & Wellbeing Program
The University of Melbourne
keblock@unimelb.edu.au

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Research with culturally and linguistically diverse communities

Encouraging people to participate in research can be a tough gig. We are usually asking people to volunteer their time just for a small piece of information, which is sometimes only relevant and generalisable if large numbers provide this same, small piece of information. As researchers we know the enormous value that gathering this information can have to inform change at the policy, practice and the community level. But the general population sometimes does not place the same value on research or understand how important the research and outcomes can be. So, how do we encourage people to participate in research? And in particular, how do we encourage those from culturally and linguistically diverse backgrounds, where research may not be a common concept or practice.

I am currently working on a large scale child oral health research project entitled ‘Teeth Tales’, being conducted in partnership with government and community agencies  and Australian families from refugee and migrant backgrounds. Oral health is included in the Victorian Health and Wellbeing Plan 2011 – 2015 as a priority area for preventative health, as it is one of the most preventable diseases, particularly for children. Tooth decay is Victoria’s most prevalent health problem, with more than half of all children and almost all adults affected (1). Initial qualitative research was conducted with mothers from Lebanese, Iraqi and Pakistani backgrounds exploring oral health practices, beliefs and service needs. We learnt about many cultural differences and the real interest these communities have to learn more about keeping their children’s teeth healthy. From this earlier research, a community-based trial was developed to include an oral health education program for parents delivered by a trained educator from the same cultural background. This peer educator is able to talk about traditional beliefs and practices and introduce parents to the key Dental Health Services Victoria oral health messages of ‘Eat Well, Drink Well, Clean Well and Stay Well’. The program also included a site visit to local dental and family services. In addition to this education program, local services underwent a review of their practices to improve their competence in dealing with culturally diverse communities.

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Photo from:  http://www.dshs.state.tx.us/dental/promo_oh.shtm

For this trial we recruited Lebanese, Iraqi and Pakistani families in metropolitan Melbourne with children aged 1 – 4 years. We wanted to make sure that the research was as useful and relevant to families as possible so we sought the advice and expertise of relevant cultural organisations. They provided guidance on the cultural practices and beliefs of the target cultural groups, and the cultural appropriateness of our research methodology. They also helped us to recruit families, conduct the trial, interpret the findings and they provided language assistance. If it wasn’t for these partnerships we may have been lucky to recruit 10 families rather than the over 500 families who ended up participating! The advice and support of these cultural partners is invaluable when trying to recruit families with a refugee or migrant background, some of whom may be unfamiliar with research conduct, health promotion and the Australian health system.

In order to evaluate the success of the program we needed to check children’s teeth before and after the trial, as well as ask parents to complete a questionnaire. The free dental screenings for the children proved to be a key incentive for parents to register for the study. Oral health is one of the most contentious current health issues in Australia as access to fast, affordable dental care is often not available. The private dental system is run as a business and many walk out of the service with an expensive bill. The public dental system has huge waiting lists and strict eligibility for access. We found that many parents were not aware that children and refugee and asylum seekers in Victoria are considered a priority group for public dental services access. So when our study offered a free dental screening for children many families jumped at the opportunity!

The strategies outlined above helped us to successfully recruit over 500 families into our study. Engaging culturally and linguistically diverse groups in research can be difficult, but is very important, particularly for health services that need to respond to the evolving health needs of refugee and migrant and groups.

To read more about the ‘Teeth Tales’ study please visit:  http://mccaugheycentre.unimelb.edu.au/research/current/intergenerational_health/teeth_tales

Blog by Dana Young

Research Fellow, Child Public Health

The University of Melbourne

e: dana.young@unimelb.edu.au

References

  1. NACOH. 2004, Healthy mouths healthy lives: Australia’s National Oral Health Plan 2004-2013. Adelaide, National Advisory Committee on Oral Health, Australian Health Ministers’ Advisory Council.

How voting for equity will make life better now and in the future

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This article was originally published on The Conversation.

With the upcoming election, we wanted to provide our perspective to the ongoing debate. This article outlines some of our key thoughts regarding pressing election issues.

The impending federal election provides a good opportunity to pause and ask ourselves what kind of society we want to live in. The decision we make will impact both our lives and that of our children as they develop into adults and become tomorrow’s decision-makers.

At times, real policy messages can get lost in the noise of the election campaign and we are left thinking that the only rational option is to vote for selfish reasons.

But what if living in a society in which some of us are much better off than others is actually bad for all of us – even those of us who are most privileged?

The problem with inequality

There’s considerable evidence that more unequal societies have lower life expectancy and higher mortality rates; higher rates of stress and mental illness; more crime and higher imprisonment rates; and reduced quality of life.

This is not just because less egalitarian societies have more poor people, whose health and social outcomes pull down the average. Even the relatively wealthy in more unequal societies (such as the United States) do worse than others with similar levels of income living in societies with a more even spread of wealth (such as Scandinavian nations).

In Australia, rising average incomes over the last three decades have been accompanied by increases in inequality. Although polls suggest that voters’ greatest concern is the economy, research shows that beyond a certain level, increases in a country’s wealth are not associated with increased health, happiness or longevity for its people.

This is not only true for adults, a UNICEF report looking at the well-being of children in wealthy countries draws a similar picture.

This idea underpins much of our focus on inequalities within child public health research; social and economic inequalities will determine future economic status, educational achievement, and social inclusion of children.

So, what are the implications of an “equity lens” for considering the array of policies presented to us as the federal election looms? If inequality is bad for all of us, how should we weigh up the major parties’ offerings on disability support, paid parental leave, same-sex marriage, and asylum seekers?

Disability issues

Some policies appear to be moving in the right direction. DisabilityCare Australia (the National Disability Insurance Scheme) for example, is a significant policy that has bipartisan support.

At present, the level of support a person receives depends on the state in which they live, whether their disability is congenital or acquired, and how it is acquired.

When fully rolled out, DisabilityCare will result in funding being allocated directly to an individual or, in the case of children, their parents or legal guardians, to provide the support necessary to meet their needs.

While the implications for equity will ultimately be determined by how services are delivered, the policy ensures assistance for a far greater proportion of families dealing with disability.

Parental leave

Paid parental leave is an international indicator for child health and well-being. So how do the major parties’ schemes measure up?

Much of the Labor party’s criticism of the Coalition’s more “generous” plan to provide women on salaries of up to A$150,000 with 100% of their income for six months focuses on its affordability. Perhaps the more concerning issue is its impact on equity.

Many of the most disadvantaged families in our society – those with parents not in paid employment, or in insecure, low-paid, intermittent, or casual jobs – may be worse off than under current arrangements. This is particularly so if the baby bonus (the A$5,000 to which they are now entitled) is reduced or abolished to fund the new scheme.

If paid parental leave is intended to provide children with the best possible start in life, then surely we need to ensure that its provision does not widen the gap between rich and poor.

Same-sex marriage

Marriage equality is an area of contrast between the two major parties. Although the Labor party changed 85 pieces of federal legislation in 2008 to bring “equality” to same-sex parented families, the negative rhetoric and lack of leadership from both sides of politics (until Kevin Rudd’s very recent declaration of support for same-sex marriage) has a significant impact on same-sex attracted parents and their families.

In fact, stigma resulting from inequity is linked to poorer child health outcomes. Although children with same-sex attracted parents are generally doing well, a lack of equitable recognition by politicians is an ongoing source of disadvantage.

Asylum seekers

It can be difficult to keep up with the shifts in asylum seeker policy as the major parties vie with each other to be seen as the most “hardline” and more capable of “stopping the boats”.

Important human rights arguments and international legal obligations aside, what are the implications for global equity of reducing foreign aid to pay for ever more expensive policies of deterrence?

In the national context, we are spending billions of dollars annually on off-shore processing of refugees. The same amount of money could provide better and more productive settlement outcomes for many more refugees in Australia. And there would be funds left to contribute to high-quality government education, health care, and public transport for all of us.

We also now have policies whereby asylum seekers “lucky enough” to be living in our community rather than detained, are denied the right to work or be reunited with other members of their family. What kind of under-class are we creating, and how will the children growing up in those families experience the future?

Everybody’s business

Typically, concern with social justice is associated with the political left. And it appears to be something we’re all too ready to jettison for the supposed benefits of greater economic growth.

But if inequality is bad for all of us, then it’s actually in our own self interest to prevent it. And it certainly is in the interests of our children for us to consider the impact of policies on social equity when casting our votes this weekend.

Authors: Dr Karen Block, Dr Elise Davis, Prof Elizabeth Waters, Dr Lisa Gibbs & Dr Simon Crouch