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The complex art of benefit-sharing0

 

In community-based participatory action programs (programs which have a research component but which are also focussed on community development and empowerment), it might be possible to identify a link between a research project and a benefit to the participating community. Over and above conducting the study, in research on domestic violence, studies have provided emotional and practical support for victims, offering information about, and organizing access to, formal and informal services, providing feedback to the study community and relevant agencies, and supporting or engaging in advocacy on behalf of abused (Usdin et al. 2000). Work on victims of state violence has also advocated for broader political change (Stanley 2012).

However, in other circumstances it may be far more likely that participants may contribute to research but gain very little direct or even no benefit from it. The lack of reciprocity may be particularly problematic if participants are drawn from vulnerable groups.

For example, members of poorer communities have a right to feel aggrieved if research undertaken in their communities is only likely to be of benefit to wealthier societies. This is most obviously the case where multinational pharmaceutical corporations trial drugs or procedures in the Global South that are in the end likely to be priced out of the reach of participant communities or which were never relevant to their needs. Not surprisingly, therefore, the concept of benefit-sharing has been most widely developed in discussions of health and genetic research.

In response, international agreements and statements related to biomedical research such as the Declaration of Helsinki (from 2000 onwards) and non-human genetic and bioprospecting research such as the legally-binding Convention on Biological Diversity (1992), formalised in the Nagoya Protocol (Convention on Biological Diversity, 2010), instituted obligations relating to benefit-sharing for projects that fell within their jurisdiction. These agreements recognised that:

Those who contribute to developments in science and technology ought to share in the benefits, so if those benefits are not shared with the contributors to scientific advancement, that advancement is exploitative. (Arnason and Schroeder, 2013, p. 21)

As a result, the Nagoya Protocol pointed to the principle that research projects should offer benefits to participants. Non-financial benefits might include: sharing research results; collaboration, cooperation and contribution in research and development programmes, education and training; institutional capacity-building; contributions to the local economy; research directed towards priority needs of the participating community; institutional and professional relationships that can arise from an access and benefit-sharing agreement and subsequent collaborative activities; livelihood security benefits; and, social recognition. It is easy to imagine how such benefits, in the context of biomedical research, can be applied to social research; or, at least, it would be if social researchers were funded at the same level as biomedical researchers.

Unfortunately, the art of benefit-sharing has proved to be complex.

First, it might not be straightforward to identify what constitutes a benefit, particularly at the beginning of a researcher’s engagement with a new community. In her recent critique of transnational Feminist researchers, Rajan (2018) portrayed some external attempts at intervening in support of women’s rights in the Global South as ‘unfairly patronizing, or alternatively… ill-advised and characterized by a lack of sufficient knowledge of local context and concerns’ (p.271).

Second, it may not always be easy to work out what a particular community might regard as a fair way of sharing benefits. Even those projects that have sought to implement formal benefit-sharing arrangements have struggled to achieve a just and equitable distribution of benefits. For example, there is evidence that women have been marginalized in the negotiation and implementation of benefit-sharing arrangements, despite (and indeed because of) their additional susceptibility to exploitation within vulnerable communities. In addition, it is possible that some benefits aimed at individual participants might undermine commitments to respond to injustice at a macro-level and might even cause intra-community conflict. For instance, providing a participant family with additional food in a village where food is scarce may cause resentment among neighbours.

Third, some disciplines are less likely than others to generate tangible benefits and, even if they can, researchers may not be able to assure that the intended benefits of a research project will flow to participants. They may be particularly powerless in the face of powerful institutions whose job it is to restrict the freedom of participants. Zion et al. (2010), for example, argued that researchers seeking to work on projects on self-harm by asylum seekers funded by the Australian Commonwealth government were likely to be compromised. As asylum seekers are subjected to indefinite mandatory detention in Australia, Zion and her colleagues concluded that even projects aimed at improving the mental wellbeing of detainees risk legitimizing a detention regime that inevitably breached human rights.

Finally, acceptance of the importance of benefit-sharing arrangements is not universal. In 2008, the United States effectively opted out of the provisions of the Declaration of Helsinki that relate to ensuring that research participants must be allowed access to tested clinical interventions that were found to be successful and that research in low and lower middle-income countries must be designed to benefit local communities. Even before that time, there was little evidence that Institutional Review Boards in the US were taking the requirement seriously (Macklin, 2004).

So, benefit-sharing offers a way of directing both the outcomes and the process of research towards the pursuit of global and social justice. Unfortunately, a broader range of disciplines need to do more to develop and share strategies of benefit-sharing before we can have confidence that it has found a place in across our research programs.

Acknowledgements:

This article further develops an argument that will appear in Israel, M. & Fozdar, F. (in press) The ethics of the study of ‘Social Problems’ . In Treviño, J. & Marvasti, A. (eds) Researching Social Problems. New York: Routledge.

Bibliography

Arnason, G. and Schroeder, D. (2013) Exploring Central Philosophical Concepts in Benefit Sharing: Vulnerability, Exploitation and Undue Inducement. In Schroeder, D. and Lucas, J.C. (eds.) Benefit Sharing: From Biodiversity to Human Genetics. Springer. pp.9-31

Convention on Biological Diversity (2010) Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization to the Convention on Biological Diversity. http://www.cbd.int/abs/doc/protocol/nagoya-protocol-en.pdf

Macklin, R. (2004) Double Standards in Medical Research in Developing Countries. Cambridge: Cambridge University Press.

Rajan, H. (2018) ‘The Ethics of Transnational Feminist Research and Activism: An Argument for a More Comprehensive View’, Signs: Journal of Women in Culture and Society 43(2): 269-300.

Stanley, E. (2012) ‘Interviewing Victims of State Violence’ in Gadd, D., Karstedt, S. and Messner, S.F. (eds) The Sage Handbook of Criminological Research Methods. Sage: London. DOI: http://dx.doi.org/10.4135/9781446268285.n15

Usdin, S., Christfides, N., Malepe, L. and Aadielah, M. (2000) ‘The value of advocacy in promoting social change: implementing the new Domestic Violence Act in South Africa’, Reproductive Health Matters, 8(16): 55–65.

Zion, D., Briskman L. and Loff, B. (2010) ‘Returning to History: The Ethics of Researching Asylum Seeker Health in Australia’, The American Journal of Bioethics, 10(2): 48-56. DOI: 10.1080/15265160903469310

Contributor
Prof. Mark Israel
Senior consultant AHRECS – AHRECS Profile | mark.israel@ahrecs.com

This post may be cited as:
Israel M. (24 July 2018) The complex art of benefit-sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-complex-art-of-benefit-sharing

We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.

On the Problem of “Worldlessness”. Do The Declaration of Helsinki and the Council for International Organizations of Medical Science Guidelines Protect the Stateless in the Research Context?0

 

Associate Professor Deborah Zion
Chair, Victoria University, HREC.
deborah.zion@vu.edu.au

Can these bones live? Ezekiel, 37:3.

The Declaration of Helsinki has considerable guidance on working with vulnerable research participants, and vulnerability in research is the focus of the Council for International Organizations of Medical Science (CIOMS) guidance document. Both of these documents have undergone recent revisions[1]. However, a broader question remains about these and other national guidelines; namely, how can we translate them into practice? When conducting research with one of the world’s most vulnerable populations, namely those seeking asylum, guidelines must be operationalised with creativity so that the research imperative can be fulfilled.

For Hannah Arendt, the refugee was the archetypical figure that revealed the contradiction between universal rights and national sovereignty. For her it was the loss of rights which was, and remains, the defining attribute of the refugee. She insists that the fundamental deprivation of human rights is manifested first and above all in the deprivation of a place in the world.

In Australia the vulnerability experienced by statelessness is further exacerbated by such persons being incarcerated in offshore detention centres on Nauru and in Papua New Guinea, shut away from the oversight of human rights institutions. Nonetheless, there is an imperative to conduct research about this population, in order to record the conditions of detention and to bear witness, as an act of solidarity, the egregious human rights violations suffered by those detained.

What then do the guidelines say about vulnerable populations, and how can we translate this into research with refugees and asylum seekers?

Clause 19 of The Declaration of Helsinki, states that

Some groups and individuals are particularly vulnerable and may have an increased likelihood of being wronged or of incurring additional harm. All vulnerable groups and individuals should receive specifically considered protection[2].

CIOMS Guideline 15 and the accompanying commentary state that

When vulnerable individuals and groups are considered for recruitment in research, researchers and research ethics committees must ensure that specific protections are in place to safeguard the rights and welfare of these individuals and groups in the conduct of the research.

The account of vulnerability in this Guideline seeks to avoid considering members of entire classes of individuals as vulnerable. However, it is useful to look at the specific characteristics that may render individuals vulnerable, as this can aid in identifying the special protections needed for persons who may have an increased likelihood of being wronged or of incurring additional harm as participants in research. Different characteristics may also co-exist, making some individuals more vulnerable than others. This is highly dependent on the context. For example, persons who are illiterate, marginalized by virtue of their social status or behaviour, or living in an authoritarian environment, may have multiple factors that make them vulnerable [3].

In Australia, The National Statement on Ethical Conduct in Human Research[4] specifically mentions refugees in Chapter 4.3, as persons likely to be in dependent and unequal relationships, thus indicating the complexity inherent in working with disempowered populations.

It is the case that asylum seekers have multiple layers of vulnerability, based upon rights’ deprivation, age, previous experience of torture, sexual violence, gender and family separation. These guidelines set some broad perimeters that are certainly worthy of consideration and, as a framework, they are indeed useful. There is, however, no detail about how we might translate from theory to practice[5].

In particular, they do not help us resolve the conflict between on the one hand obtaining informed consent from those detained, where access is limited, conditions constrain autonomy, and we cannot check for understanding and competence, and on the other the imperative to conduct research. CIOMS guidelines 9 and 10 give explicit direction concerning informed consent and, consistent with many other guidelines, prohibit research without consent unless the benefit is very great and the potential risk very small. On this basis, direct research involving asylum seekers in detention cannot be carried out.

More particularly, Calvin Ho suggests the guidelines do not go far enough in addressing situational and structural contributions to vulnerability[6]. These leave researchers working in situations where there is great structural as well as personal vulnerability for participants to find creative ways to uncover, record and analyse injustices that might otherwise be hidden from public view, and from mechanisms of accountability. We encourage researchers to find ways of creating and utilising all forms of data, such as published reports, newspaper articles, and interviews with those who have knowledge but are less vulnerable, without ever compromising the importance of informed consent.

How should both researchers and those engaged in ethics review think about these complex issues? The first issue relates to informed consent, especially when asylum seekers are incarcerated, and speaks to whether or not powerless people, even when fully competent, can give informed consent. We also encourage researchers to find a way to fulfil research imperatives that promote justice for highly vulnerable populations wherever possible, through gathering data in ways that do not compromise those who are already highly vulnerable[7].

For our own part, over 14 years we collected a considerable number of interviews from healthcare providers, including rich descriptive accounts of detention life and the way in which the right to health was, and continues to be undermined. These were matched with every other source available. We have built up a very complex picture of life in onshore detention as well as on Manus Island and Nauru. While things continue to deteriorate, it is not possible for people to pretend these events did not take place.

There were two other important outcomes. The first was that healthcare providers could utilise our work when making decisions about whether to work in asylum seeker detention and, if so, the ethical implications of their choice. The second was that those who spoke to us became witnesses to the suffering they had seen. Their participation therefore became an act of solidarity for those who could not speak for themselves. As David Robertson et al. state:

[Witnessing] entails being with people who are victims of injustice or violence and thereby showing that they have not been abandoned… it entails testifying to the outside world about the injustice or violence observed, and advocating that the world community bring about change. Bearing witness can thus facilitate and fuel human solidarity in the face of tragedy, and contribute to focussing international attention.[8]

Notes

[1] CIOMS, International ethical guidelines for health-related research involving humans, 2016. https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf

World Medical Association, Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects,2018.https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/\

[2]  World Medical Association, ibid.

 

[3] CIOMS, ibid.

 

[4] NHMRC, The National Statement on Ethical Conduct in Human Research, 2007. Updated 2015. https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e72_national_statement_may_2015_150514_a.pdf

 

[5] Such guidance is provided elsewhere, for example by the European Commission in its Guidance Note on Research on refugees, asylum seekers and migrants. See http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/guide_research-refugees-migrants_en.pdf

 

[6] Calvin Ho, CIOMS guidelines remain conservative about vulnerability and social justice, Indian Journal of Medical Ethics, June, 2017.

 

[7] Such strategies might be included in submissions to the NHMRC’s consultation on the National Statement Part 4. See https://ahrecs.com/resources/nhmrc-invitation-to-provide-feedback-to-inform-a-review-of-section-4-of-the-national-statement-on-ethical-conduct-in-human-research

 

[8] David Robertson et al. What kind of evidence do we need to justify humanitarian medical aid? The Lancet, 360, no.9329, 2002, pp.330- 333. DOI: https://doi.org/10.1016/S0140-6736(02)09558-2

 

Disclosure of interest
I declare I have no conflict of interest.

Contributor
See above

This post may be cited as:
Zion D. (30 March 2018) On the Problem of “Wordlessness”. Do The Declaration of Helsinki and the Council for International Organizations of Medical Science Guidelines Protect the Stateless in the Research Context?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/on-the-problem-of-wordlessness-do-the-declaration-of-helsinki-and-the-council-for-international-organizations-of-medical-science-guidelines-protect-the-stateless-in-the-research-con

Building beneficial relationships when conducting research with migrant communities0

 

In my experience, projects that involve working with migrant groups and communities reveal a range of complex issues with regards to ethics and the types of the relationships between the researcher and participants. While acknowledging the importance of formal ethical requirements I also believe that the concept of research ethics has a dynamic nature which means that many dilemmas that will emerge during the study will require an individual approach that does not necessarily fit into set rules. In this context, researchers working with migrant communities may need to think about how they can do this in a way that benefits both sides and reflects well the research situation. One of the dilemmas here is how to balance the pre-designed with the spontaneous elements of this kind of academic research project, thus avoiding an instrumental approach to gathering data that could lack sensitivity to participants’ needs and situations.

One of the ways of thinking about the research process in ethical terms is to approach it by focusing on the following key elements: characteristics of the researcher and his/her social background, characteristics of the researched community, research methods and settings, research aim and wider agenda. What I also found helpful from my experience of conducting small-scale community-based qualitative projects was defining them through the prism of building relationships between the researcher and the participants in which the purpose and boundaries are clearly identified at all stages. While the characteristics of the researcher and his/her social background play an important role in defining their position within the group and should be taken into account, it is also important to consider how s/he wants to define the roles of researched community and engage with the participants. Would the participants be treated as anonymous interviewees, or act as full collaborators? In case of collaboration will their time be acknowledged and/or compensated, and how? How will the benefits from participation be communicated to the community, before, during and after the study?

Thinking and defining participants’ roles within the study can also help to distinguish different levels of formalisations of relationships between the researcher and the participants, for example, in the situation when one collaborates with community leaders and activists (as well as thinking whether it would be useful/appropriate to use them at all). Other factors to consider when identifying types of relationships could refer to levels of vulnerability of the participants in relation to state policies, immigration status, and media attention and, subsequently, in relation to the aim, subject and scope of the conducted research and its place and connection to wider contexts and networks.

The ‘research process as relationships’ approach also helps to acknowledge the dynamic nature of established connections and perceive them as something that can change and continuously develop throughout the study. The level of closeness, trust and involvement can differ at various points of the study depending on the range of individual and social circumstances of all involved parties. If the project allows, spending more time within the community before, during and after the fieldwork and identifying modes of engagement with community at each stage can help to establish positive relationships and ensure that participants benefit from them as much as the researcher. Working within community-based/migrant contexts can require additional levels of flexibility and sensitivity towards people and their lives, their concerns, tensions, experiences and stories. Integrating these complexities into the research process in the way that would benefit all groups involved in the study is an important ethical task. So, one should think how the benefits from participation will be communicated to the community, will the participation be recognised and how, whether any events will be planned after the fieldwork and whether any further opportunities for contribution to the project will be created? Furthermore, the conditions of the study itself can have an impact on time required to establish positive relationships, such as, the location of the interview (at participants’ home, community centre, public space); whether any visual methods are used and which ones (participant or researcher generated photography); number of the interviews or focus-groups, whether additional methods such as observation are used; what and how to be recorded (audio or video); whether researcher approaches the whole families or specific family members; etc.

Certainly, each project has its own unique elements and conditions and there will always be aspects of the study that will only unfold during the fieldwork when researchers are actively engaged with the participants. At the same time, thinking of the value and impact of the study and how researcher-participant relationships can improve it should be as important as designing interview schedules, consent forms, and invitation letters.

Please see the detailed discussion on ethics and positionality when conducting research of migrants’ homemaking practices:

Pechurina, A. (2015) Material Culture, Migrations, and Identities. Chapter 3. Researching Russianness: A Discussion of Methods. London: Palgrave.

Pechurina, A. (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Review Online. Vol (19) 1.

Contributor
Dr Anna Pechurina – Leeds Beckett University | Senior Lecturer in Sociology in the School of Social Sciences
Leeds Beckett profile: http://www.leedsbeckett.ac.uk/staff/dr-anna-pechurina/ Personal webpage: http://www.annapechurina.com/
A.Pechurina@leedsbeckett.ac.uk

This post may be cited as:
Pechurina A. (2017, 26 July) Building beneficial relationships when conducting research with migrant communities Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/building-beneficial-relationships-conducting-research-migrant-communities

Ethical Self-Assessment: Excellence in Reflexivity or Corporatisation Gone Mad?0

 

Research ethics and integrity have always been at the forefront of my work, not only because the issues which I explore (self-injury, disability, gender and sexuality) are personal, sensitive and often stigmatised topics, but also because as a disabled, feminist researcher I have first-hand experience of the ways in which power, inequality and appropriation are often enmeshed in research methods and outputs. Conventional ethical protocols which originate in medical guidelines struggle to fully grasp and incorporate such ethical issues, as well as the dilemmas which emerge from social research more broadly. Ethical protocols rarely prompt a researcher to critically examine how issues such as power and marginalisation play out in social research, or even how to address specific issues emerging from their own project, such as how to respond to requests for specific information as in Anne Oakley’s (1981) now infamous research with first time mothers. Ethical review more often consists of tick-box protocols, which ultimately function to restrict who and what can be researched rather than to promote ethical skills, competencies and practices (see Inckle, 2015).

This mismatch between my own ethical sensibilities and the conventions of research ethics were so vast that, during my PhD research, I struggled to conceive how any research could ever be fully ethical and I became stymied with anxiety and doubt (see Inckle, 2007). Happily, since then, I have joined a research ethics committee, taught research methods and ethics, conducted, supervised and even participated in social research. As a result, I have become more reconciled with (although no less sensitive to) the possibilities of research being both an ethical and positive experience for all those involved – albeit when based on a reflexive, ethical sensibilities rather than rigid, pre-defined protocols.

Nonetheless, when I joined my current institution and discovered that ethical review operated on a self-assessment basis http://www.lse.ac.uk/intranet/researchAndDevelopment/researchDivision/policyAndEthics/ethicsGuidanceAndForms.aspx my first response was to laugh, a lot. Isn’t the whole point of ethical review, I chortled, to provide oversight and accountability via external reviewer/s? How does simply completing a self-assessment form ensure ethical competency? Isn’t this just another example of the corporatized university gone mad, where academics take on more and more administrative duties in a role of ever-increasing responsibilities and ever-diminishing autonomy?

However, with time, reflection and some experience – all of which are important ethical competencies! – my perspective on ‘ethical self-assessment’ has radically shifted. Firstly, self-assessment is not really a full description of this ethical review process. Student researchers require formal ethical validation from their supervisor, who acts as a proxy for the institution in granting approval and, in the case of staff research projects, the line-manager takes on this role. Furthermore, in certain situations, such as when required by an external funder or participating body, the researcher is compelled to present their work before a university ethics committee proper.

Secondly, while the ethical ‘self-assessment’ form requires the respondent to answer a number of fairly standard questions about their research project – including, whether deception will be used, are the participants ‘vulnerable’, will sensitive/personal issues be explored – the process nonetheless allows for nuanced and discipline-specific accountability. For example, rather than a ‘yes’ to any of these questions rendering the research unethical and in need of redesign, the researcher is invited to complete another section of the form providing further information which contextualises the project and outlines protective protocols. What is most important, is that these justifications and protections are reviewed in a discipline specific context, thus moving the entire process away from universalised assumptions and locating it within specific field of the researcher. For example, in a medicalised context a non-clinician interviewing those who are defined as ‘vulnerable’ by virtue of their experience of disability and/or self-injury would be considered highly problematic. Similarly, an insider-researcher with shared experience of such a ‘health’ or disability experience would be considered compromised in their role and unable to ‘objectively’ and reliably conduct the research. However, from a social sciences (and rights-based) perspective, using these kind of labels to position certain individuals as compromised and/or inadequate researchers is in itself unethical and discriminatory.

Indeed, ethical ‘self-assessment’ has proven beneficial for my current research regarding the health, identity and social impacts of cycling for people with physical disabilities, including its impacts on their experience of themselves as able/disabled. In a standardised context it is likely that a number of ethical problems would be highlighted with this project: exploring sensitive issues amongst a ‘vulnerable’ group; an insider-researcher (I am a disabled cyclist); and quite possibly the assumption that the topic is so anomalous as to not justify the research at all – it is a commonplace assumption (especially among medical professionals) that people with physical disabilities cannot cycle, despite it being significantly easier than walking or wheelchair propulsion for many disabled people http://www.wheelsforwellbeing.org.uk/. However, ethical ‘self-assessment’ enabled me to position myself, my research participants and the value of the research within a critical social science and rights-based perspective which locates disability as a social identity rather than an individual vulnerability. However, this does not mean that I have avoided thinking clearly and carefully about the ethical protocols. I have taken time to consider the research, it’s potential impacts at the individual, social and policy levels, and to work to ensure that it is a positive and empowering experience for all those involved (including me). I have also developed my information, consent and researcher commitment forms in line with best practice in feminist and sensitive research (Byrne, 2000; Inckle, 2007; 2015).

Overall then, my experience suggests that my initial incredulous laughter at the thought of ethical self-assessment was misplaced. In an era of increasingly regimented ethical protocols which unilaterally apply limited, discipline-specific assumptions across the entire research community, and thereby curb the possibilities of who can conduct research, about which topics and with whom, then discipline-specific ethical self-assessment provides a new opportunity for contextualised ethical review. This kind of approach, coupled with a nuanced, reflexive approach to the development of ethical competencies could offer a significant way forward for ethical review in the social sciences.

References

Byrne, A (2000) Researching One An-Other, pp.140-166 in A Byrne and R Lentin (eds) (Re)Searching Women: Feminist Research Methods in the Social Sciences in Ireland. Dublin: Institute of Public Administration.

Inckle, K (2015) Promises, Promises… Lessons in Research Ethics from the Belfast Project and ‘The Rape Tape’ Case, Sociological Research Online 20(1): 6 http://www.socresonline.org.uk/20/1/6.html

Inckle, K (2007) Writing on the Body? Thinking Through Gendered Embodiment and Marked Flesh. Newcastle-upon-Tyne: Cambridge Scholars Publishing

Oakley, A (1981) Interviewing Women: A Contradiction in Terms, pp.30-61 in H Roberts (ed) Doing Feminist Research. London: Routledge.

Contributor
Dr Kay Inckle
Course Convener in Sociology
LSE
Blog/Bio | K.A.Inckle@lse.ac.uk

This post may be cited as:
Inckle K. (2017, 24 April) Ethical Self-Assessment: Excellence in Reflexivity or Corporatisation Gone Mad?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethical-self-assessment-excellence-reflexivity-corporatisation-gone-mad

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