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Taking Time in the Midst of a Crisis: Prior Informed Consent, Sociability and Vulnerability in Ethnographic Research3

 

As an anthropologist, the way I work has particular features which are, in my view, both empowering and paralysing. This is especially the case when working with people who define themselves or who are defined as vulnerable, and in field contexts which are challenging, difficult or unpredictable. In this post, I would like to address Prior Informed Consent procedures as an example of the ethical challenges that I need to address in my new project which aims to interact and collaborate with one of the most vulnerable populations entering the European Union today: undocumented pregnant refugees and migrants.

My ERC-funded project, entitled ‘Intimate Encounters in EU Borderlands: Migrant Maternity, Sovereignty and the Politics of Care on Europe’s Peripheries’ is a comparative study of maternity care delivery towards undocumented pregnant migrants in EU Borderlands. Research will be carried out in 7 maternity care services located in the densely crossed borderlands of 4 EU Member States. Most of the maternity care services in question are in the Mediterranean, in Italy, Spain and Greece, but two field sites are also located in Overseas France, in French Guiana and Mayotte (in South America and in the Indian Ocean respectively). All of the field sites are to be found on Europe’s external borders, in remote peripheries which have very specific social and economic identities in relation to the rest of the country. My main interest lies in studying doctor-patient interaction from a moral and biographical point of view, and in documenting life in these peripheries from the perspectives of the full range of actors involved. Ethnographic data will be collected during a 16 months long fieldwork period which will span the second and third years of the project, and which will involve all project team members (that is myself and three other researchers).

Research will be carried out through long-term participant observation of everyday life in the field locations. Commitment to the research from all research participants will have to be total, as my team and myself will have to physically move (taking our families along with us) to the field sites for the whole duration of the fieldwork. Working times will vary according to circumstances, but could involve day and night-time work, every day of the week. This kind of research requires flexibility, adaptability and resilience.

Long-term participant observation is peculiar: it is an ecosystem of its own, which may appear intense and exotic, but which often feels awkward, lonely and frustrating. Time takes on a different texture and daily routines are upset by the turns of events. Building social relations based on amity at first, and trust in the long-term with a wide range of people is not generally something which can happen overnight. For this reason I am convinced that when working with vulnerable subjects, the investment of time affords a great advantage in contributing to ethically-sound research.

Anthropologists approaching a field site have to prepare their fieldwork through an extensive, collaborative, multi-level process of introduction, presentation, authorisation and consent, which works concurrently at communal and individual level. It is very common to hear that for anthropologists fieldwork starts at home, as they slowly gather the first contacts and points of reference, through which they will seek affiliations, authorisations, permits, and translate their research objectives according to the audiences they deal with.

As anthropologists, our entry into a field context often follows a gradual scoping process based on information and presentation, which navigates several levels of leadership and authority. Only once all authorisations are cleared can fieldwork at community-level begin. And from community-level, one can approach individuals or family units. Because the personal and emotional involvement of fieldwork is so high, the social bonds which develop through long-term fieldwork are deep and long-lasting. In this context, consent in research is to be considered as a flexible, long-term commitment to the well-being of the source communities, and their regular updating on the progress of the research. This commitment can last a lifetime.

In the context of my new research project, a good proportion of the persons I will be working with belong to a highly mobile and invisible population with whom the nurture of social bonds may not be easy to maintain, to say the least. My ERC-funded project includes, among other research participants, undocumented migrants. Some of these migrants will be pregnant, others may be minors, and some will be both. This means that they represent another category of vulnerability than people I had been previously working with who belong to remote ethnic minorities (I have been working with Amerindian communities of northern Amazonia in Suriname and French Guiana since 2003). The social and political contexts in which research is carried out are always shifting, and there is no single definition of vulnerability, nor one single form of social interaction during ethnographic fieldwork. Approaching each specific social context requires good prior knowledge and a great deal of flexibility. For instance the pregnant patients I might have to interview are generally likely to have higher levels of literacy than the indigenous women with whom I was sharing the intimacy of daily life in the interior of Suriname. It may be easier to establish some form of initial communication, since there are likely to be more common cultural references. Personal, emotional and physical circumstances may however be extremely different. Moreover, whereas I have been working since 2005 in clinical contexts, these can vary greatly, and medical environments can be extremely hierarchical structures in which self-determination and agency can be challenged by the most simple acts.

In such challenging research environments, single solutions are impossible to envisage as circumstances can change very rapidly. As others have noted, ‘prior informed consent of research participants does not in itself make human-subject research ethical’ (Rosenthal 2006: 119), nor does it guarantee that all research participants and other human subjects will behave ethically. Obtaining prior informed consent in such challenging contexts first of all requires time. Having time to use the appropriate channels to seek authorisations in due course, to develop an extensive web of social contacts, and only gradually to approach the most vulnerable research participants. To ensure as independent and unbiased a process as possible, researchers in the field have to be aware of local circumstances and dynamics, and resist the temptation to rush into a challenging research environment currently at the centre of a media frenzy over what is often portrayed as an escalating EU migration crisis.

Reading a newspaper in Italy – and any other EU Member State for that matter – is a painful experience. I am constantly exposed to images of despair and tragedy unfolding in my country’s territorial waters. I often feel like rushing there to finally get started documenting the voice of those who remain invisible, but rushing is not the way to go about it, despite the climate of crisis and urgency. Ethically-sound research takes time, even more so in the midst of a crisis.

Reference:

Rosenthal, J. 2006. ‘Politics, Culture, and Governance in the Development of Prior Informed Consent in Indigenous Communities’, Current Anthropology 47(1): 119-142.

Vanessa Grotti
European University Institute
Vanessa’s EUI page
Vanessa.Grotti@EUI.eu

This blog may be cited as:
Grotti, V. (2016, 26 January) Taking the Time in the Midst of a Crisis: Prior Informed Consent, Sociability and Vulnerability in Ethnographic Research. AHRECS Blog. Retrieved from: https://ahrecs.com/human-research-ethics/taking-the-time-in-the-midst-of-a-crisis-prior-informed-consent-sociability-and-vulnerability-in-ethnographic-research

Aboriginal research and ethics: Could we be making it harder than it really is? Six things to focus your decision making1

 

What do we know?

I wish I could say there’s a simple formula that will reduce the anxiety of researchers (both Aboriginal and non-Aboriginal) when it comes to research that involves Aboriginal peoples. But I’ve found that when any of us put on a research hat (not just the lab coat), then this brings another set of expectations to the enterprise.

Karen Martin is an Associate Professor, School of Education and Professional Studies, since 2013 she has been the Deputy Chair: Griffith University Human Research Ethics Committee, and is a Noonuccal woman from North Stradbroke Island (south east Queensland) with Bidjara ancestry (central Queensland).

How do I know this? To be honest, it comes more from my research experience and training more than my Aboriginal experience. What???? Yes…it’s true because research has a particular purpose with particular expectations, including ethics. That’s something often misunderstood when it comes to research with Aboriginal peoples. In the same way as not all researchers understand Aboriginal peoples, not all Aboriginal peoples understand research.

So, over time, I’ve been thinking just as much about the ‘what’ and the ‘how’ and the ‘why’ that is Aboriginal research and ethics to be offering the following points. I’ve had to limit myself, so here the six main things for making Aboriginal research ethics far less complicated.

What could we do (or not do)?

1) Don’t treat the research design as separate to the research ethics: Treat them equally and start the ethical considerations at the same time as the design and methodology. Waiting until the 11th hour is guaranteed to bring confusion; headaches; frustration that no amount of creative writing will alleviate this.

2) Don’t lower the bar on your research decisions: We’re in the best position of anyone to think within and outside the boxes of institutional requirements and legalities. We’re the academics and we’re the scholars. Use your knowledge of research and of the contexts and conditions of the research to resolve dilemmas, and at all costs, please don’t lower the bar. Where you have limited knowledge, do what all scholars should… (no, don’t just Google it)… gather information and get advice. Understanding (not just reading) the Australian Institute of Aboriginal and Torres Strait Islander Studies’ (AIATSIS) Guidelines for Ethical Research in Australian Indigenous Studies (GERAIS), 2012 and the NHMRC’s Values and Ethics, 2003 is a good start.

3) Don’t turn the bar into a benchmark: Given that research occurs in institutions that are the pinnacle of knowledge and education (you simply can’t go higher), then resting on your reputation or your identity could work counter to knowledge building. At worse, it could be stagnation (having become too comfortable) or it could be rigidity (having become fixed and unchanging). What’s the solution? Go for rigour and go for scholarship (see No. 2).

4) Don’t over-complicate the research and so, the ethics: This can happen when the AIATSIS or NHMRC Guidelines are treated as a checklist, especially in developing the research ethics application. The key word here is ‘guidelines’ and so they’re effective in guiding your decisions throughout the entire research (see No. 1). The old KISS adage (Keep It Simple Scholars) iskm_1512invaluable here.

5) Don’t lose sight of the research purpose: Here’s where we might have differing ideas. Mine (and this is reinforced by the AIATSIS and NHMRC Guidelines) is the main research beneficiaries (as different to research data users) have to be Aboriginal peoples and communities. So, give just as much attention to deciding how they will benefit. Show that you understand the contexts of the research and the conditions under which it will operate. Write this clearly in the ethics application.

6) Don’t be a ‘consumer’ of literature of Aboriginal research ethics: Be a scholar and always
be scholarly. Show that you have more than a surface level of information (i.e. only cite certain authors or documents). Demonstrate where and how such literature has indeed informed your thinking and decision making. Next, give due attention to how you write (and avoid perpetuating stereotypes or misinformation) as much as to how you research and understanding of the role of an ethical researcher and ethical research. Words can wound.

What does this all mean?
There are both macro levels of research and ethics as there are micro levels. Knowing this is a strong start to being able to attend to both from the outset and at all phases during the research. Here’s an image that will help understand this point. It’s about working the macro and the micro; breaking through the barriers and not lowering the bar.

* Are there any short cuts? NOOOO.

* Is there another way to do this? This is the second decade of the 21st Century (not the 15th Century, 18th or 20th Century).

* What do I do next? Step back; think about the macro levels and the micro levels of the research; begin your research ethics at the same time as the research design and expect to learn deeply.

* Whatever you do… don’t be a ‘consumer’. You’re a scholar and your core business is knowledge acquisition; knowledge transfer and its transformative power.

References

Australian Institute of Aboriginal and Torres Strait Islander Studies. (2012). Guidelines for ethical research in Indigenous Studies. Retrieved from http://www.aiatsis.gov.au/sites/default/files/docs/research-and-guides/ethics/GERAIS.pdf

National Health & Medical Research Council. (2003). Values and ethics guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Canberra: Commonwealth of Australia. Retrieved from http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e52.

Assoc Prof Karen Martin
School of Education and Professional Studies, Griffith University
View Karen’s EPS profile
karen.martin@griffith.edu.au

This blog may be cited as:
Martin, K (2015, 23 December) Aboriginal research and ethics: Could we be making it harder than it really is? Six things to focus your decision making. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/aboriginal-research-and-ethics-could-we-be-making-it-harder-than-it-really-is-six-things-to-focus-your-decision-making

Navigating ‘Research Fatigue’0

 

In human research, some groups of people (grouped by identity, association, condition and/or location) may become over-represented as research subjects in a particular discipline, or in research generally. These people may develop a sense of ‘research fatigue’ (Clark, 2008) – in simple terms, they’ve been over-researched and now they’re just over it. It is likely that a sense of being mistreated by researchers, a lack of trust between participants and researchers/institutions, and/or a failure of research to return any kind of benefit to the participant community, may exacerbate research fatigue. Subsequently, they may be reluctant to participant in any further research (Clark, 2008).

People belonging to marginalised or vulnerable groups may be particularly susceptible to over-research and research fatigue. This is partly because such groups may be identified as having persistent problems social or medical researchers may be hoping to help, and perhaps also because people in these groups have disproportionately suffered from poor and unethical research practices. For example, in Australia, Aboriginal and Torres Strait Islander Peoples have frequently been the subjects of research conducted without permission, or without due consideration to appropriate and ethical processes (Knight, Comino, Harris, & Jackson-Pulver, 2009; Martin, 2003).

I conducted my PhD research with an over-researched community. The people of North Stradbroke Island/Minjerribah – particularly (but not exclusively) the Quandamooka and other Indigenous Peoples of the Island -are suffering from research and consultation fatigue, and many had complaints about the way they had been treated by earlier researchers, or the fact that the issues they prioritised were being ignored.

Several months after my field work concluded, a colleague of mine – Rachael Cole-Hawthorne, another PhD student – began her fieldwork on North Stradbroke Island/Minjerribah with the Quandamooka Peoples. She encountered an unanticipated ethical difficulty; participants in my research (or people who had heard about me and my research – it’s a small community and people talk!) sometimes mistook her for me. We were PhD students from the same institution, after all, and bore a passing resemblance to one another. The issue of mistaken identity was always laughed off, however it meant that the anonymity of some of my participants had been unintentionally compromised; if they hadn’t mistook Rachael for me, they may not have mentioned their participation in my project.

It also became clear to Rachael that the success of her research rested, to a degree, on the goodwill I had developed. If I had treated participants poorly, or if they found participation unpleasant or uncomfortable, she may have encountered difficulties in recruitment.

As a result of these experiences, Rachael and I are working together on the topic of ethical research with over-researched communities. Our (very) preliminary thoughts, based on a review of the literature and our research experiences to date, suggest a few key considerations for researchers. Firstly, one should not dismiss the possibility of engaging with an over-researched community on that basis alone, but there is a particular onus on the researcher to justify why this site/these people, including to the participants themselves. Obvious relevance and utility, and clear links to the ‘uniqueness’ of that community that makes them the best pool of participants may help overcome initial wariness (and weariness). There is, perhaps, extra impetus to demonstrate a genuine commitment to the over-researched group, and focus additional attention on the building and maintaining of relationships. For me, this included spending as much time as I could on the Island, for blocks of time, rather than making day trips or just talking to people on the phone. Finding ways to connect potential participants to the research topic, and finding ways to deliver meaningful and useful outcomes for them, is also of heightened concern in research fatigued communities. Exploring alternative epistemologies and methodologies may help, including those that allow participants to influence the research approach, analysis, and products. Not only may alternative approaches help create a less exploitative and more mutually beneficial research relationship, the sheer novelty of them may help overcome fatigue. And, as always, researchers should be prepared to hear ‘no’, to respect that answer, and should have a Plan B in case they just can’t overcome research fatigue.

Rachael and I are collaborating with some of our research participants, particularly amongst the Quandamooka community, in putting together an open access publication that will explore these issues. In that vein, we hope to present a few different perspectives on the topic of research fatigue, illuminate some of the issues for researchers to consider when seeking to engage with an over-researched group, and identify some principles and guidelines for ethical practice in this area that are grounded in the experiences of those who are subject to over-research. Stay tuned!

References

Clark, T. (2008). ‘We’re Over-Researched Here!’: Exploring Accounts of Research Fatigue within Qualitative Research Engagements. Sociology, 42(5), 953-970.

Knight, J. A., Comino, E. J., Harris, E., & Jackson-Pulver, L. (2009). Indigenous Research: A Commitment to Walking the Talk. The Gudaga Study – an Australian Case Study. Bioethical Inquiry, 6(4), 467-476. doi: 10.1007/s11673-009-9186-x

Martin, K. B. M. (2003). Ways of knowing, being and doing: A theoretical framework and methods for indigenous and indigenist re-search. Journal of Australian Studies, 27(76), 203-214.

Dr Natalie Osborne,
School of Environment, Griffith University,
View Natalie’s ResearchGate profile,
n.osborne@griffith.edu.au

This blog may be cited as:
Osborne, N (2015, 2 November) Navigating ‘Research Fatigue’. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/navigating-research-fatigue

Do we need consent for the continued use of children’s biological samples and data in research – and what if the grown up children cannot be located?1

 

Parental consent is sufficient to authorize research involving infants and young children who do not have the capacity to take part in such decisions. But what happens when the children grow up and the research is ongoing?

According to the National Statement, where research is ‘complex or long-running, or participants are vulnerable’, consent ‘may need to be renegotiated or confirmed’ so that research participants are ‘given the opportunity to continue their participation or withdraw’. This suggests that at some point, researchers will need to get consent from the children themselves. The difficulty is that when children reach an age where they can consent for themselves and parental consent no longer applies, they may not know that they are involved in such research.

A study clarifying ethical responsibilities in the Australian paediatric biobanking context, reports that the responsibility to inform children when they are able to decide for themselves, belongs to no one: “Most children at 18 wouldn’t know about samples” and there is “no onus to inform people”. This state of affairs will likely cease to be a problem as new biobanks and studies get set up and better procedures are put in place. Currently though, we are left with questions about whether it is ethically acceptable for researchers to use samples and data, given with parental consent, from children who are now grown up and who cannot be located.

A U.S. study has addressed this very topic. It reports that most adults are not concerned about continued use of their samples and data collected during childhood but they want to be asked and they are generally willing to provide consent. Nevertheless there were 26% who think it is not acceptable to use their samples and data if they cannot be contacted. The authors conclude that adults have an interest in decision-making and that should be respected. Their consent for continuing research should be sought, but if they cannot be located, ‘it is generally acceptable to continue to conduct research’. The authors concede though that the scenario they use in the interviews lacked detail about things that would affect people’s attitudes – things such as risks, the type of study and identifiability.

So, how should researchers and Human Research Ethics Committees respond if the source of the sample cannot be found? Can researchers use the sample or should they throw it out?

The answer is – it depends. The National Statement reminds us that there is a need for researchers and HRECs to engage in ‘deliberation on the values and principles’, exercise their judgement, and have ‘an appreciation of context.’ What this means is that to arrive at an ethically defensible position for continuing without consent, researchers will need to explain their position, giving reasons for continued use without consent.

In order to justify using previously collected samples/data where the source cannot be located, researchers need good ethics based reasons for using this sample rather than a different sample from someone who has given consent or is willing to donate a new sample. There may be good reasons. For instance, good ethics based reasons may be to do with rare conditions and limited number of samples. Whatever the reasons, these reasons will be weighed against reasons for not using the sample without consent. Reasons in support of the need for consent after sources become adults, are autonomy based i.e. participation should be a reflection of that person’s own choices or reasons, not that of parents or researchers. A different but important reason is that proceeding without consent poses a threat to public trust and confidence in research – and the success of this type of research depends on the support of the public and their willingness to contribute. Reasons to continue without consent based simply on costs, time and inconvenience for researchers do not do the job.

References

Goldenberg, A. J., Sara, C. H., Botkin, J. R., & Wilfond, B. S. (2009). Pediatric Biobanks: Approaching Informed Consent for Continuing Research After Children Grow Up. The Journal of pediatrics, 155(4): 578-583

NHMRC (2007) National Statement on Ethical Conduct in Human Research. Accessed 4 September, 2015, from http://www.nhmrc.gov.au/guidelines-publications/e72

Spriggs, M., and C. Fry. 2015. Clarifying ethical responsibilities in paediatric biobanks. AJOB Empirical Bioethics Available early online at: http://www.tandfonline.com/eprint/QDVEzAwZsTqT9QkwvBjB/full

Dr Merle Spriggs BA (Hons), M.Bioeth., PhD
ARC Research Fellow
Children’s Bioethics Centre / Centre for Health Equity,
University of Melbourne.

This blog may be cited as:
Spriggs, M (2015, 4 September) Do we need consent for the continued use of children’s biological samples and data in research – and what if the grown up children cannot be located?. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/do-we-need-consent-for-the-continued-use-of-childrens-biological-samples-and-data-in-research-and-what-if-the-grown-up-children-cannot-be-located

Dr Merle Spriggs (mspriggs@unimelb.edu.au) is a Research Fellow at the Children’s Bioethics Centre, Royal Children’s Hospital; the Centre for Health Equity, Melbourne School of Population and Global Health, University of Melbourne; and an Honorary Research Fellow at the Murdoch Childrens Research Institute. She has developed substantial educational resources about consent for Human Research Ethics Committees (HRECs) and researchers who conduct research involving children. Other recent research includes ethical issues and responsibilities in paediatric biobanking, e-health ethics, specifically the ethics of internet-based research and the ethical issues of electronic health records. Merle has over 20 years experience on hospital and university Human Research Ethics Committees and she has been an expert witness for two US law firms in cases involving child research. She is also a member of the Royal Children’s Hospital Clincical Ethics Committee and Clinical Ethics Response Group.

Current projects: Merle is part of a team working on an ARC Discovery Project: Involving children in social research: Balancing the risks and benefits; she is also leading a project titled: ‘Using research participants as co-researchers: Ethical considerations” funded by the University of Melbourne, Ethics and Integrigy Development Grant Scheme.

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