Research initiatives designed, produced and delivered through engagement with communities require a new approach to ethical standards. Codes of ethics developed for traditional research are not aligned to engagement and need reappraisal.
Applying the concept of engagement to Participants United confronted us with dilemmas. We wanted to address the power imbalances between the researcher and the members of the community. In contexts of marked economic inequality, disability or intercultural differences, participatory research initiatives encounter new challenges often arising from historical patterns of marginalisation and lack of inclusion.
With the exception of some research in mental health, there is a dearth of critical appraisals of the ethics of participatory processes (for a rare example see the discussion in Pearce 2010 – below).
1. Research into, and evaluations of, community engagement usually limit the role of those who have been participants in such processes to that of passive subjects. Rather than allowing such participants to collaborate in envisioning what effective and ethical engagement would have looked like for them, they are normally used to provide data that allows organisers to present an uncritical account of the engagement process.
2. Although researchers increasingly engage communities, each sub-discipline applies its own ethical perspective to how this is carried out, usually without cross-referencing to views from beyond the sub-discipline. Building and applying an effective ethical code requires cross-disciplinary collaborations that allow the sharing of insights, including with non-academics, such as community-based practitioners.
3. In the physical sciences research findings are couched in a form to allow replication. In community engagement, by contrast, each project is designed to fit a particular context and the specific objectives of one or more groups of people. It is therefore unlikely to be exactly replicable in a different setting.
Despite being motivated by a desire to improve care, involvement initiatives led by professional researchers can unwittingly cause harm because they are usually not aware of the need for safeguards that are qualitatively different from those used in conventional research. The result that many engagement processes needlessly risk harm to individuals and communities. By contrast there are small but growing number of initiatives led by patient and user groups, such as in the areas of mental health and HIV/AIDS, where individuals and groups have built a process of engagement with researchers. Here the patients and service users have joint control over the research questions and are able to become interpreters of their own experience.
Our analysis of results from Participants United and Tom’s review of the recent literature raise the following three key issues any research attempting community engagement project should address:
1. Respect for Autonomy and Beneficence: Community engagement often draws on the traditional medical model, under which experts inform “lay” people about a research procedure that is to be performed on them. This often fails to respect the autonomy of individuals, including their desire for different benefits to those envisaged by the researcher, and thus could be regarded as unethical in these terms (Beauchamp and Childress 2001). More recently, some engagement processes have allowed patients and service users to join with professional researchers not as subjects but as co-investigators, thereby contributing their own expertise to the research process.
2. Framing: Community engagement is often framed by the concept of people needing expertise, because they are sick (in the context of medical research), ignorant or both. Knowledge exchange then channels participant input towards the generation of data that will improve medicines or services. This framing of the issues engenders a relationship that, as the results of the California Well-Being Project demonstrated, leaves people feeling that “the meaningful human aspects that encompass personal and social needs and all the factors that differentiate people from symptoms, brains or molecules” have been ignored, reducing the benefit the engagement process could have otherwise made to them.
3. Empowerment: Those convening any engagement process must negotiate its place on a spectrum of empowerment. At one end are processes that are driven by hierarchical decision-making structures in the commissioning body, often lacking openness and the appearance of a commitment to major change based on their conclusions. At the other end of the spectrum are collaborative processes in which multiple interest groups jointly shape a transparent dialogue process (Wakeford and Singh 2008).
Beauchamp TL & Childress J 2001 Principles in biomedical ethics. Oxford University Press.
International Community of Women living with HIV/AIDS 2004 Guidelines on ethical participatory research with HIV positive women. Available at: www.icw.org/files/EthicalGuidelinesICW-07-04.pdf
Pearce J (ed.) 2010 Participation and Democracy in the Twenty First Century City. Palgrave-Macmillan.
Wakeford T & Singh J (eds) 2008 Towards empowered participation: stories and reflections. Participatory Learning and Action, Special Issue, 58, June.
People’s family arrangements and responsibilities may require their absence, paying for carers, or bringing the family along. There are also issues relating to loss of earnings or welfare state benefits. All require sensitivity and flexibility if participants are to feel their dignity has been respected.
Processes of informed consent provide an important ethical safeguard for communities. However, in a context of processes based on collaboration, the traditional medical model, under which experts inform lay people about a procedure that is to be performed on them, is insufficient. It commonplace in engagement processes that the participants are as much performers of the research as the professional researchers.
Sharing the outputs of any research project is the bread and butter of most academics and the institutions they work for. Collaboration agreements are drawn up to determine revenue splits from the exploitation of intellectual property resulting from any new knowledge created as a direct result of the efforts of the academics collaborating on the project. Some will even go as far as defining an academic publishing strategy, again, sharing the authorship of papers according to the respective intellectual contributions from colleagues.
Few collaboration agreements or IP contracts include the contribution made to a research project by those participating in the process, often freely and usually in their own time; ordinary members of communities who receive little more than a contribution towards their expenses.
When we were talking through the original bid for Participants United the research team agreed to go beyond the established norms. Creative Commons is an established mechanism for enabling all parties involved in the generation and dissemination of content – however it is produced – to share collective ownership of a project. This could include how participants are represented. It could also include sharing ion the success of a project which in some case will mean revenue accrues to both researchers and participants.
Consent forms for Participants United include the phrase:
- I understand that any materials published from this project will be under a Creative Commons licence that will enable me to use them should I wish.