What can PRO-Ethics learn from research ethics and integrity experts?
The fields of research ethics and integrity have significant expertise in some forms of public participation in research. Research ethics committees, for example, oversee the participation of humans as research subjects, particularly in the biomedical sciences. In a recent workshop, PRO-Ethics RFOs and research ethics and integrity experts gathered to discuss what the project can learn from their fields of expertise.
The PRO-Ethics pilots are testing different forms of participation - they aim to involve civil society actors, end-users, members of the public and other stakeholder groups in research funding organisations’ (RFOs) decision-making processes. Research topics range from assistive technologies to urban resilience.
While these types of participatory processes have become increasingly common in research and innovation systems over the past two decades, ethical assessment practices for them are underdeveloped.
In September 2020, Nesta, with help from EUREC and EUREKA, organised a first dialogue event between PRO-Ethics RFOs and members of the wider research ethics and integrity community. The workshop was part of a series of activities that aim to ensure that the PRO-Ethics pilots, and the ethical framework for participation that the project is producing, are informed by existing knowledge and best practice in research ethics and integrity.
Attendees included PRO-Ethics RFOs and an international group of ethics and integrity experts. Invitees were identified by PRO-Ethics partners, building on stakeholder mapping work and a series of eight in-depth interviews carried out in preparation for the workshop.
The aim of the workshop was to start surfacing the specific ethical challenges posed by participation in the pilot fields of action. It was also designed to explore what can be learned from the fields of ethics and integrity, and identify where there are gaps PRO-Ethics needs to fill in developing governance mechanisms for ethical participation in the work of research and innovation bodies.
During the workshop, RFOs presented their pilot projects, and experts were invited to comment on the ethics and integrity issues that the pilots might raise. Examples included:
● Ensuring ‘citizens’ and ‘experts’ taking part in decision making processes can contribute on an equal footing. For example, citizens can be at a disadvantage if calls, proposals and meetings use technical jargon or academic language, or if others involved (such as researchers) do not respect their contributions or expertise.
● Protecting participants from harm. For example, when citizens are involved in taking funding decisions, they may receive pushback from those whose funding proposals are not successful.
● Avoiding plagiarism or theft of ideas. For example, citizen participants might not be aware of the need to keep some information confidential, or know what is appropriate to share publicly and what is not.
● Managing potential conflicts of interest and ensuring participation processes are not captured by interest groups. In an introductory provocation, Dirk Lanzerath from EUREC raised the possibility of tension between participation in research funding decision making and scientific freedom, while in breakout sessions, others noted that exercises in topic identification or strategy-setting might be affected by power disparities between advocacy groups.
Attendees also commented that PRO-Ethics needs to develop clear working definitions of ‘ethics’ and ‘participation’ in the context that RFOs are working in. While these terms have relatively specific meanings when applied to the involvement of research subjects or patients in biomedical or animal research, it is not always clear what they mean when applied to the different fields of action for the pilot projects. As Gerda Geyer from the Austrian Research Promotion Agency (FFG) noted:
“We need a kind of taxonomy for ethics and participation in our project... In our group discussion at the workshop, the difference between ethical aspects in applied research/market-oriented projects in contrast to more basic research oriented activities became quite obvious.”
We were only able to scratch the surface of these issues in the workshop, and look forward to discussing them more fully with research ethics and integrity experts as our stakeholder engagement activities continue. We will be carrying out more interviews with stakeholders as we prepare for further dialogue events over the course of the project. We are very grateful for the time and consideration they gave to the questions facing our RFO partners in this first session.
By Madeleine Gabriel, Alex Glennie and Juliet Ollard, Nesta