Ethics review of artistic research: challenging the boundaries and appealing for care

Abstract

In 2019, a new national Ethics Review Authority (Etikprövningsmyndigheten, EPM) was created in Sweden. In 2020, Sweden’s Ethical Review of Research Involving Humans Act was revised, tightening this legislation, and increasing penalties for its infraction. This article draws on empirical material generated by artistic research conducted with a norm-critical contemporary music ensemble. Two of the musicians who collaborated with this research identify as disabled. Consequently, in accordance with EPM, my artistic research was subject to mandatory ethics review. Reflecting critically on my own experience of seeking ethical approval for this artistic research project, I show how EPM’s process of ethics review enacts scientific boundary work in Sweden that privileges the interests of academic disciplines that are already well-established. As a corrective to EPM’s scientific boundary work I propose the application of an ethics of care that recognises the complex relationalities that exist between research institutions, researchers and research participants.

Introduction

In this article, I make the argument that a tightening of legislation and the institutional restructuring of ethics review in Sweden is specifically to the detriment of research that applies qualitative and ethnographic research methods (Dagens Nyheter, 2023; Quennerstedt, 2022; Wästerfors, 2019). The impact of changes to institutional ethics review is particularly pronounced for artistic researchers and the application of artistic research methods in Sweden (Swedish Research Council’s Committee for Artistic Research, 2023).

In 2019, a new national Ethics Review Authority (Etikprövningsmyndigheten, EPM) was created to administrate Sweden’s Ethical Review of Research Involving Humans Act (2003), and in 2020, the Ethics Review Appeals Board (Överklagandenämnden för etikprövning, ÖNEP) was created to enforce EPM’s decisions and to report infringements of ethical review legislation to Sweden’s public prosecution service. Also in 2020, revisions that tightened restrictions and introduced tougher penalties for contravention of the Ethical Review of Research Involving Humans Act (2003) came into force that make it illegal to pursue academic research in Sweden without ethical approval (if ethical approval is required). ¹ The revisions that came into force in 2020 also increased the maximum penalty for researchers contravening the law from a 6-month to a 2-year prison sentence (Skarsgård, 2022b).

Since ÖNEP started operating in 2020, the number of cases referred to Sweden’s public prosecution service for breaches of the Ethical Review of Research Involving Humans Act (2003) have increased considerably, with ÖNEP acknowledging that their policy is to pursue even minor infringements of the law in a bid to set legal precedent (Almqvist and Hultin, 2022; Skarsgård, 2022c). The interpretation of the Ethical Review of Research Involving Humans Act (2003) by EPM, and its enforcement by ÖNEP, has generated considerable debate in Sweden, with concerns that the criminalisation of even minor errors or omissions by researchers during ethical review disproportionately disadvantages smaller research projects and stifles innovative research (Alvesson et al., 2022; Börjesson et al., 2023; Dagens Nyheter, 2023; Esaiasson and Sohlberg, 2023; Hellerstedt, 2023; Jacobson et al., 2022; Jacobsson, 2021; Wyndhamn, 2022). In this article, I reflect on my own experience of submitting an artistic research project for ethics review by EPM. During the process of submitting my artistic research project for ethics review, I experienced the application of scientific boundary work (Gerber, 2023) that demonstrated a friction between EPM and my own ethical concerns.

Scientific boundary work defines the ‘active efforts to construct the binary between science and not-science’ (Gieryn, 1983 in Gerber, 2023: 382). ² Surveying the emerging field of artistic research in Sweden, Alison Gerber recognises an application of scientific boundary work within Swedish academia that acts to define what legitimate academic research can exist within academia, and what illegitimate research must be kept outside it.

Applying theoretical perspectives from science and technology studies (Latour, 2007; Star and Griesemer, 1989), I recognise that the laws and rules that assemble people and technologies into institutions, exert a regulating agency. While they do not determine the behaviour of individuals; technologies, laws, rules, and the institutions they assemble into do afford certain possibilities and limit others. As such, my argument is not that EPM pursue an explicit policy of scientific boundary work that aims to benefit already well established research fields, but that new legalisation and the formation of two new state authorities (EPM and ÖNEP) has generated institutional infrastructures that, in certain instances, exert scientific boundary work that is to the detriment of artistic research and to the benefit of already well-established research fields in Sweden.

As a corrective to the scientific boundary work applied by EPM, I advocate for the application of an ethics of care (Brabeck and Brabeck, 2009; Puig de La Bellacasa, 2011). As Israel describes, an ethics of care is the application of a critical reflexivity that:

requires researchers to understand how their positions in hierarchies of power might affect their perceptions and to challenge the possibility and value of maintaining neutral and distanced relationships with research participants (2015b, p. 9)

An application of care is fitting for my artistic research methodology because ‘care’ suggests a situated ethics approach that remains attentive to the context and relationships within which the research is conducted. An ethics of care offers a useful critical perspective on the scientific boundary work of EPM because an ethics of care requires consideration of the complexity of the power relationships that exist between research institutions, researchers and research participants. These relational complexities are presently obscured by an ethical review framework that is strongly informed by the ethical concerns and governance processes of biomedical research.

Historically, the need for established ethics review processes were most evident post-second world war, in response to ethical transgressions within biomedical research (Beauchamp and Childress, 2019; Israel, 2015a; Shamoo and Resnik, 2015: 251). Sweden has its own history of scandals involving the unethical treatment of humans in biomedical research, including the infamous Vipeholm experiment ³ in the 1940s and 1950s in Lund, and more recently the misconduct of trachea surgeon Paolo Macchiarini at Karolinska Institutet in Stockholm (Else, 2019; Krasse, 2001). These historical and contemporary breaches of biomedical research ethics inform both Sweden’s public collective consciousness, and the 2020 revisions to the Ethical Review of Research Involving Humans Act (Dagens Nyheter, 2023; Esaiasson and Sohlberg, 2023; Tengland and Hermerén, 2021; Wästerfors, 2019;Else 2019; Lagrådsremiss - Etikprövning av forskning tydligare regler och skärpta straff, 2019). An ethics of care is proposed in this article as a critical position from which to problematize a process of institutional ethics review in Sweden that privileges the ethical concerns of biomedical research.

Elfantöra and ShareMusic

The process of institutional ethics review that I address in this article was for an artistic research project that was conducted together with Elefantöra (Elephant Ear), a norm-critical contemporary music ensemble that includes disabled and non-disabled musicians. The Elefantöra ensemble were formed in 2017 by ShareMusic and Performing Arts (n.d.) (ShareMusic), a Swedish knowledge centre for artistic development and inclusion. Elefantöra and ShareMusic have been highly successful in advancing an inclusive and innovative approach to contemporary music, with Elefantöra receiving critical acclaim within Sweden’s contemporary music community. In October 2020 I was commissioned by ShareMusic to create a new musical work together with Elefantöra as part of a Signatur funded project that aimed to generate new repertoire for inclusive ensembles (Signatur, 2022). My collaboration with Elefantöra generated Listening with Elephant Ears a new contemporary music composition that received its premier at the Lund Contemporary Music Festival in March 2021 (Boothby, 2023). My artistic research engagement with Elefantöra also included interviews and group discussions with the musicians and ShareMusic employees, meaning that the research generated not only new sound work, but also rich ethnographic data.

Elefantöra are norm-critical in their inclusion of both disabled and non-disabled musicians, but importantly, Elefantöra are also norm critical in convening composition and performance that includes musicians with a diversity of musical abilities and knowledge. The Elefantöra musicians are not classically trained and some of them do not read conventional musical notation. During the creation of Listening with Elephant Ears, the musicians expressed clearly that it was primarily the creative possibilities of including diverse musical knowledge and diverse musical abilities within Elefantöra that was important to them. The Elefantöra musicians made it clear during our collaboration that they did not want to be defined as musicians in terms of disability. In an interview, one of the musicians explained that they would like the audience to:

focus on the music and not the disability I have, that’s an important thing. Some people just see the wheelchair and not the person I am. [It’s important for me to] just focus on the music and the musician I am and not the wheelchair [laughs]. ⁴

I recognise the preference among the musicians not to be defined in terms of disability as part of a broader strategy deployed by Elefantöra and ShareMusic. This strategy aims to avoid both damage centred narratives (Tuck and Yang, 2014) and inspiration narratives (Young, 2014) of disability, a conscious artistic and activist strategy employed by Elefantöra that avoids perpetuating binary distinctions that divide non-disabled/disabled musicians (Boothby, 2023). The application of artistic research methodologies in my work with Elefantöra is of particular relevance because artistic research exists as a transversal practice within Swedish academia, resisting definitive categorisation in ways that enable artistic research to traverse boundaries that traditionally divide scientific research from artistic practice (Borgdorff et al., 2020; Gansing, 2013; Gerber, 2023). As such, artistic research is ontologically consistent with the norm-critical artistic practice of Elefantöra whose musical composition and performance is also a transversal practice, existing across boundaries that would usually separate elite cultures of contemporary music and disability activism.

Artistic research

The field of artistic research in Sweden is diverse and there is little consensus as to how artistic research can be categorised definitively. For the purposes of this article, I apply a definition that is offered by Borgdorff et al. (2020) that states that artistic research is ‘knowledge, understanding, and experiences enacted in creative processes and embodied in artistic products such as art works, compositions, and performances’ (p. 1). In their definition Borgdorff et al. (2020), recognise also that artistic research demands analysis, interpretation or theoretical contextualisation that can demonstrate how artistic practice ‘relates to other research and how it is embedded in academic, cultural, social, or political spheres and discourses’ (p. 4).

My artistic research engagement with Elefantöra took place over three composition workshops (October–December 2020), a 1-day rehearsal (October 2021) and a performance of Listening with Elephant Ears (October 2021). This process of creation was interspersed with interviews, discussions, and production meetings with ShareMusic employees and the Elefantöra musicians (October 2020–October 2021). Artistic research was chosen as the methodological approach for my work with Elefantöra because it afforded the possibility for myself and the ensemble to develop a mode of communication through music that was common to us all. Working with Elefantöra and ShareMusic over an extended period of time afforded an iterative research process that allowed me to return to the ensemble at regular intervals with artistic responses and questions, and allowed Elefantöra to challenge my artistic work with their own contributions. My work with Elefantöra is not wholly representative of all artistic research methodologies, but my work with Elefantöra is one clear example of an application of artistic research methods within academic research.

Alison Gerber argues that artistic research in Sweden is a field in-flux and as a result subject to scientific boundary work. With Gerber reflecting that:

relations between artistic researchers and scientific researchers are fragile [in Sweden] because the scientifically trained are so strongly invested in their hard-won disciplinary expertise in things like ‘methods’, ‘research’ and ‘knowledge’ (Gerber, 2023: 396)

The symbolic boundaries that scientific boundary work entrenches also function to bind together and protect those actors, objects and infrastructures, including people, institutions, regulations, laws and ethical principles, that define what can be accepted inside, and what should be kept outside academia. ⁵ The process of submitting my artistic research project with Elefantöra for institutional ethics review by EPM clearly demonstrated to me that EPM exists as one of those sites at which scientific boundary work is performed to discipline artistic research in Sweden.

Applying for ethics approval in Sweden

An application for ethics review to EPM demands the completion of an extensive and detailed application form, and in my case the oversight and approval of my department head and PhD supervisor. My application for ethics review required that I answer 58 separate questions divided across 13 different categories (Etikprövningsmyndigheten). The Swedish application for ethics approval also demands an extensive number of appendices, including a detailed project plan, reproduction of all the information that will be presented to research participants, reproduction of all interview formulae, focus group schedules and plans for workshops. The final version of the application that I submitted to EPM ran to 46 pages. Making an application for ethics review in Sweden is arduous and anxiety-inducing because EPM is a state authority and ethics review in Sweden is mandated in law for all research disciplines; Sweden is the only country in the world in which this is the case Dagens Nyheter, 2023. Any incorrect information or omissions in the application could make an individual researcher liable to legal action and imprisonment. Once submitted, the processing of the ethics review can take several months. During the processing of an application, the review committee are entitled to seek clarification or demand revisions, which can generate further delays. To apply for ethics review costs 5000 SEK, roughly equivalent to 450 EUR. An application for ethics review by EPM can only be made in the Swedish language and must be authorised by a researcher that has a PhD before it is submitted.

This detailed and legally enforced ethics review process demands critical reflection because the application process and the institutional and legal mechanisms that it enforces put individual researchers in a vulnerable position in relation to legal and state authorities. It also places researchers in a vulnerable position in relation to the universities that employ them, because once an application for ethics review is submitted the individual researcher is legally responsible for ethical conduct in research not the university that employees them (Alvesson et al., 2022). The ethical review process also demands critical reflection because it is strongly informed by the ethical concerns of biomedical research. The dominance of biomedical ethical concerns are of particular concern to me, because my research with Elefantöra contested routine exclusions associated with ableism and a medical model of disability.

One of the most problematic sections of the ethics review application form for me and my work with Elefantöra was Section 2 titled Typ av forskning – initiala frågor, (Type of Research – Initial Questions). Section 2 of the application form addresses §3 of the ethics review law and the processing of sensitive personal data; question 2.8.1 in section 2 asks researchers to Make a judgement regarding the type of sensitive personal data that will be processed during this project. To comply with the ethics review law for my research, I must select the category Health under question 2.8.1 because, according to the European General Data Protection Regulation (GDPR) which is incorporated under §3 of the Swedish ethics review law, disability is a category of sensitive personal data under health. Two of the musicians that contributed to my project with Elefantöra identify as disabled making my research with the ensemble subject to mandatory ethical review in Sweden under §3 of the law. Although the ensemble preferred not to be defined as musicians in terms of disability, to legally participate in my research, the musicians were compelled to accept the categorization ‘disabled’ even if they did not agree that disability is a source of sensitive personal data. Even if the musicians provided unambiguous informed consent and stated that they did not want to be defined as disabled, in Sweden they are still judged by EPM to generate sensitive personal data and so remain subject to §3 of the Swedish ethics law. As a consequence, research participants that have been diagnosed with a disability cannot escape being categorised as disabled if they wish to participate in scientific research.

The categorization of ‘disability’ as a source of sensitive personal data under the category health assumes a medical model of disability. According to a medical model, disability is considered an onotological fact, a physical impairment to be corrected at the site of the body. In contrast, a social model of disability recognizes that impairment exists only as disability in specific social and physical contexts. From the perspective of a social model of disability, it is not, the physical inability to hold a musical instrument that disables a musician, but the design of the instrument that is itself disabling (Ellcessor et al., 2017). In applying the category of ‘health’ under §3 of the ethics review law, EPM limits a research participant’s agency to define for themselves in which social or physical contexts they understand an impairment to be a disability. Maria Lahman cautions that processes such as these, whereby institutional ethics review designate certain people or groups as vulnerable, even if research participants do not accept that label themselves, becomes one of those sites at which ethics review performs acts of institutional Othering, creating boundaries that entrench existing distinctions between normative and non-normative identities (Lahman, 2018: 13). The designation of people with disabilities as a source of sensitive personal data in my artistic research with Elefantöra is highly inconsistent with the ethical values of the research participants themselves and it served to designate some musicians as vulnerable, even when those musicians did not recognise themselves as being vulnerable within the context of this research project.

The coincidence of legislation and scientific boundary work in Sweden’s institutional ethics review

The experience of submitting an application for ethics review to EPM demonstrated to me that the processes associated with institutional ethics review in Sweden are subject to scientific boundary work; scientific boundary work that is counter to my ethical concerns as an artistic researcher. The influence of the scientific boundary work performed by EPM is greatly enhanced by a close interrelationship between the law and the ethics review process in Sweden. On their website, EPM make explicit reference to the interrelationship between the law and ethics review, demonstrating how scientific boundary work is performed precisely at this intersection. Under the heading Do I need to Apply for Ethics Review? ⁶ EPM state that the:

first question that you [the researcher] need to address is whether what you are planning is research according to the definition of the term that exists in §2 of the Ethical Review of Research Involving Humans Act (Etikprövningsmyndigheten). ⁷

§2 of the Ethical Review of Research Involving Humans Act (2003) states that research is ‘Scientifically experimental or theoretical work intended to result in new knowledge and development outcomes on a scientific basis’ (2003). In tandem with its definition of research, §2 of the ethics review law also provides a definition of a responsible research body, described in §2 as a ‘government authority or a physical or legal entity under whose auspices the research is conducted’ (2003). ⁸ The assumption of this legislation being that scientific research must take place within a responsible research body. The normative assumption in this legislation, that scientific research must take place under the auspices of a legally defined entity, demonstrates that the distinction EPM makes between research/not research is strongly linked to legal and institutional structures. This distinction between a responsible research body and research conducted outside of a responsible body is of fundamental importance for myself as an artistic researcher as my work exists simultaneously both within and outside academia, carrying different but equal value in both of these spheres. EPM’s citation of §2 of the Ethical Review of Research Involving Humans Act (2003) makes explicit the fundamental importance of legislation for ethical review in Sweden, and how the interpretation of the law by EPM aligns legislation with scientific boundary work.

The consequences of this scientific boundary work are evident in the ramifications of the legal processes that are imposed on researchers by EPM. One case that has received extensive coverage in the Swedish media concerns a PhD student reported by ÖNEP to the public prosecution service because they were suspected of processing sensitive personal data without ethical approval (Almqvist and Hultin, 2022; Jacobson et al., 2022; Skarsgård, 2022a; Wyndhamn, 2022). The research in question was conducted at Swedish pre-schools, as part of a PhD that began in 2013. It was not until 2018 that GDPR made the processing of sensitive personal data a legal matter in Sweden. The PhD student’s supervisors are clear that the research in question has been carried out responsibly and according to the ethical praxis in the field of education research of which the PhD is part. Significantly, there is no suggestion that the research has caused any harm to any research participants. After independently reviewing this case, Jonas Almqvist and Eva Hultin, two Professors from universities unconnected with the research in question, judged that that PhD student and their supervisors had diligently followed the relevant ethical praxis within the social sciences and the law as it applied at the time of data collection. Following their review, Almqvist and Hultin (2022) cautioned that ÖNEPs action demonstrates the emergence of a ‘new ethics review praxis [in Sweden] grounded in a review by lawyers as opposed to a collegial ethics review based primarily on ethical concerns’. ⁹ Almqvist and Hultin propose that a pragmatic response to this new reality of judicial ethics review is that ‘all projects that engage people while collecting empirical material must undergo ethics review’ (Almqvist and Hultin, 2022). ¹⁰ An ethics review orthodoxy within which all researchers must seek ethics review for research that engages people, as a protection against possible prosecution, positions EPM as a powerful gatekeeper with considerable potential to apply scientific boundary work that defines what research can exist within academia and what research should be excluded from it. The reporting of this PhD student to the public prosecution service clearly demonstrates the real-world consequences of the legally enforced scientific boundary work that is being implemented by EPM and ÖNEP. This specific case which concerns qualitative research within the Swedish school system also demonstrates that the scientific boundary work applied by EPM and ÖNEP has ramifications, not only for artistic research, but also for other types of ethnographic and qualitative research.

The application of scientific boundary work to Artistic research

Although an application of scientific boundary work by EPM and ÖNEP is evident across a range of academic disciplines, the novelty of artistic research as an emerging methodology in Sweden, and its lack of a historically reliable discipline specific collegial ethics review process, places artistic research in a particularly vulnerable position when EPM applies its scientific boundary work. In their 2023 Research Review (Swedish Research Council’s Committee for Artistic Research, 2023), the Swedish Research Council’s committee for artistic research state that their remains uncertainty as to how EPM apply the law on ethics review to artistic research, noting that ‘Uncertainty about what is to be tried according to the legislation is [. . .] considerable, not just among researchers but also among the public agencies involved’ (2023: 26). Uncertainty as to how the ethics review law should be applied to artistic research, and the lack of transparency that this uncertainty generates, is of particular concern for artistic researchers. Without a formal statement from EPM regarding their interpretation of the law, individual ethics review committee members, most often from outside the field of artistic research, are free to apply their own judgements regarding what they personally understand to be the relevant ethical considerations for artistic research. This lack of transparent policy, or formal interpretation of the law as it applies to artistic research, makes it difficult for artistic researchers to prepare applications for ethical review or to appeal those decisions in which ethical approval for artistic research is refused.

An ethics of care

I propose the application of an ethics of care as a corrective to the institutional ethics review framework applied by EPM and the scientific boundary work that EPM performs. The application of an ethics of care would provide a generative complement to the present ethical framework applied by EPM because care is a form of situated ethics that challenges the normative and essentialised categorisations imposed by EPM. These categorisations divide researcher and research subject (forskningspersoner), ¹¹ and define some research participants as a source of sensitive personal data because they have a physical impairment. Puig de la Bellacasa (2011) states that an ethics of care caries value in part because it is a situated ethics capable of troubling the ‘critical distance typical of scholarly work’ (p. 98). Applying an ethics of care, a researcher can generate interest by situating themselves ‘in-between – inter-esse – not to divide, but to relate’ (Puig de la Bellacasa, 2011: 98). Making my artistic research with Elefantöra a matter of care enhanced my interest in the experiences and opinions of research participants, and a social model of disability. The research intervention succeeded in making apparent the friction that was generated between a social model of disability (preferred by the participants) and the medical model of disability that is dominant in EPM’s definition of sensitive personal data. The application of an ethics of care in this research was also useful for revealing the complex balance between privilege and vulnerability that I, as a researcher and employee of a Swedish university, attained through association with academia. Applying an ethics of care enabled me to be attentive to my own vulnerabilities as a researcher and the vulnerabilities of the research participants within larger institutional frameworks. An ethics of care, as I applied it, afforded both myself and the research participants an opportunity to define the vulnerabilities we experienced on our own terms, rather than in accord with legal and institutional frameworks.

An ethics of care, applied as complement to EPMs existing ethical review framework, would help to orientate EPM away from the performance of scientific boundary work and towards a boundary object infrastructure that could facilitate, rather than obstruct, transdisciplinary research. Defined by Star and Griesemer (1989) as a response to the limitations of scientific boundary work, boundary objects are scientific methods that afford communication and translation between ‘different social worlds’ (p. 388). Boundary objects can be individual technologies, or exist as larger infrastructures that afford translation between the diversity of actors that contribute to scientific research (Star, 2010). For instance, one action that would assist EPM in orientating towards a boundary object infrastructure, would be a reconsideration of mechanisms for informed consent within Sweden’s ethics review processes. At present, the informed consent of research participants is demanded by EPM as a condition for ethics approval, but the mechanisms of obtaining informed consent are strongly regulated by EPM, and can only be undertaken legally within the framework that EPM define. ¹² Currently, informed consent cannot be considered as grounds for exemption from legislation around sensitive personal data. Meaning, for example, that a research participant cannot state that they do not consider themselves to be a source of sensitive personal data. Official recognition by EPM that informed consent from a research participant could, in some circumstances, be sufficient to modify requirements of the Ethical Review of Research Involving Humans Act (2003), would be one way in which EPM could apply an ethics of care. An informed consent mechanism that affords research participants a voice within the ethics review process, the opportunity to define how they experience participation, and how they would like to be ‘categorised’ by researchers and institutional ethics review boards, would help to demonstrate an ethics of care. ¹³

Conclusion

In this article I sought to show that the revision of the Ethical Review of Research Involving Humans Act (2003) in 2020 and the formation of EPM and ÖNEP, in 2019 and 2020 respectively, has intensified the application of scientific boundary work that is performed through institutional ethics review in Sweden. This application of scientific boundary work serves to protect the interests of research disciplines that are already well-established within academia. The scientific boundary work applied by EPM is also to the detriment of those individuals and communities that academia defines as ‘vulnerable’, and those who are considered a source of sensitive personal data by virtue of their categorisation. Submitting the artistic research project that I conducted with Elefantöra for ethical review, I experienced an application of scientific boundary work by EPM that was often in tension with my own ethical concerns for the project. EPM’s interpretation of the GDPR, for example, compelled some of the Elefantöra musicians to be defined as ‘disabled’ in this research, even though this definition was in conflict with the aims of a project that aspired to escape a medical model of disability and the essentialist categorizations that medical models of disability impose.

Nevertheless, artistic research continues to exist as a transversal practice within Swedish academia where it can trouble conventional distinctions between science and not science; making artistic research an important site at which EPMs scientific boundary work and the essentialist identifications it demands can be productively contested. I have proposed that the application of an ethics of care (Puig de La Bellacasa, 2011) within artistic research offers a useful corrective to EPM’s scientific boundary work that privileges the ethical concerns of biomedical research. An ethics of care is attentive to the lived experience of all stakeholders within a research project. The relational ontology that is generated through an ethics of care can be transformative because it provides the ethical basis for an orientation towards boundary objects and away from scientific boundary work. Such an orientation might facilitate the reimagining of EPM as a boundary object infrastructure (Star, 2010) that can accommodate the ethical concerns of diverse academic disciplines, researchers and research participants. I hope that this article, and its critical reflections on my own experience, might contribute to a reorientation that validates the legitimacy of the knowledge and methods that can be generated when a broader constituency of researchers and research participants collaborate together.