There is a strong mandate in academic work to carefully plan and conduct research projects in alignment with the four tenets of ethical research: non-maleficence, beneficence, justice and autonomy. Indeed, university-based researchers cannot proceed without approval from an independent institutional ethics review board. Such oversight, however, is not as commonplace in the settlement sector, and the lines can become blurred when a service delivery organisation is seeking to engage its clients in programme research and evaluation, or in advocacy.
Our work in the settlement sector in Australia has highlighted continuing challenges with regard to gaining ongoing informed consent and ensuring that clients understand the remit of the formal contract that they enter into with the service delivery organisation. We argue that it could be beneficial for service providers to draw on scholarly ethical research principles to develop better practices to ensure that settlement practitioners do not inadvertently do harm, act in ways that are unjust, or obstruct a person’s right to make autonomous decisions about their participation.
Managing consent and expectations
In service delivery organisations, client privacy and consent forms are broadly equivalent to the information and consent forms required in research, serving a legal function in protecting both the individual and the organisation. They cover important legislative requirements, and ensure that service providers adhere to organisational requirements. The Asylum Seeker Resource Centre (ASRC) in Footscray, a suburb of Melbourne, Australia, uses a Rights and Responsibilities Charter (RRC) and Client Consent to Share Information form for this purpose. The RRC is a form developed by the organisation for internal use that new members sign to consent to the collection of their personal information and to authorise the organisation to share this data in certain ways in order for appropriate, wrap-around services to be provided. The form also clarifies the expectations for client and service provider engagement (namely, rights and responsibilities).
When an individual accesses ASRC support or services they are required to sign the RRC, which is available both in English and in a number of community languages (Persian, Dari, Malay and Urdu). The RRC should be explained in a language they understand, using an interpreter if required, so that they can confirm that they understand their rights and responsibilities. We argue, however, that many clients would not risk challenging the terms of the contract or refusing to sign the document due to concerns about losing access to services.
In terms of expectations, when a focus group was held with 11 programme participants in February 2019 to determine the participants’ experience of the ASRC’s Women’s Empowerment Program, an ethical challenge emerged around how to recognise their contribution. The majority of the women are either on very low incomes or are unemployed. After careful consideration, it was decided that AU$25 in the form of a supermarket gift voucher would be provided to recognise the women’s time, travel and input. At the crux of this ethical dilemma was whether this would set a precedent, establishing an expectation that contributions to the development and improvement of delivery would always involve a form of compensation. Given ASRC’s limited resources, this is neither sustainable nor realistic.
Similar to research settings, service delivery organisations like the ASRC are responsible for doing no harm by managing expectations; they have a moral obligation to improve people’s lives (beneficence); they have to work in ways that are fair and transparent; and they have to ensure that conditions for mutually respectful engagement are established. In addition, service providers have a responsibility to recognise the power imbalance inherent in soliciting information from vulnerable communities or people seeking asylum whose opportunities are constrained by virtue of having limited access to resources.
In particular, being reflexive is paramount. Reflexivity – the “process of critical reflection both on the kind of knowledge produced from research and how that knowledge is generated”[1] – is needed when considering how the ethical challenges of gaining informed consent are exacerbated by the fact that people are using the service because of their extreme financial precarity. In these cases, service providers need to question whether there may then be a perception of obligation – even quasi-coercion – when clients are ‘asked’ to participate in activities, and to consider how those feelings of obligation to the organisation might be mitigated.
Moreover, service providers need to be mindful also of where and how participants’ perceptions and opinions are represented elsewhere. Client-participants might not be aware that when they take part in one programme, their words may be reproduced in another setting; anonymised and composite stories are frequently used as case-studies for programme evaluation for funders or for advocacy purposes.
What more needs to be done?
The ASRC, like many other service delivery providers, uses the RRC to ensure that the expectations of both the client and the ASRC are clearly established from the outset of the partnership. However, no form can act as a ‘catch-all’ for the different ethical complexities that can emerge from working with and for vulnerable people. In the ASRC, we promote the following to ensure informed consent:
- Be culturally aware: the RRC is a long and difficult document; it may be unfamiliar and its nuances may be hard to appreciate for people from different cultures.
- Understand English language barriers to comprehension: paraphrase the main points in plain English, clarify and check for understanding, and use an interpreter if a person’s grasp of English is considered insufficient for informed consent to be given.
- Be trauma-informed and trustworthy: when people are under stress, their memory is impaired and they may not remember signing the RRC or recall what it contains; give them a copy so that they can read it again.
- Ensure client consent is continually negotiated and recognise that the client/service provider relationship will change over time.
- Provide options and choice: individuals accessing support should understand the range of ways they can be involved and that they can both opt in and opt out; by reiterating choice and agency, the service provider can share its power with the clients or members.
We end by suggesting that settlement service providers could benefit from forming oversight committees – similar to university ethics review boards but less standardised and more informal – that could meet to discuss and offer guidance on the kinds of ethical challenges that we have described here. There are many examples of good, ethically informed settlement practices; however, without working collectively and having conversations about ethics standard practice, settlement service providers run the risk of inadvertently doing harm.
Carla Nayton carla.n@asrc.org.au
Empowerment Pathways Program Manager, Asylum Seeker Resource Centre
www.asrc.org.au
Sally Baker sally.baker@unsw.edu.au
Lecturer in Social Sciences, UNSW Sydney www.unsw.edu.au
[1] Guillemin M and Gillam L (2004) ‘Ethics, Reflexivity, and “Ethically Important Moments” in Research’, Quality Inquiry, 10(2), 261–280 www.researchgate.net/publication/235930722_Ethics_Reflexivity_and_Ethically_Important_Moments_in_Research