David Eccles (gringer)
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Participant-driven Research

Informed consent, informed control, and informed trust, is important in research. We need to place importance on research participants having control over what is done.

The Problem - Lack of Control

Open research is about having control over our own research. When we consider the methods, kits, and programs used for research, we (as the “developers” of research) should have control over the way that we can use them, the way that we can study them, the way that we can change them, and the way we can share them with others for carrying out research that we consider important. A key part of this control is having knowledge about the things that we are doing, and the things that other researchers are doing. Access to that knowledge gives us the ability to avoid mistakes, both ones that have been made before (and reported by others), and ones that could be predicted by understanding the limitation of our research methods.

However, we must also be mindful of the effects that our research may have on research participants and on other people.

User Control for Software

In the computer software world, there is a concept of Software Freedom, which is a concept that concentrates more on user control than developer control. Software freedom emphasises the importance that we need to place on the users of software having control over what their software does, and the control that the users have over what is done. When this control is lost, bad things can happen, as the Cambridge Analytical scandal has shown, and subsequent commentary on the reasons why it happened. All it takes is one clueless developer; someone who didn’t have the foresight to think through all the implications of their actions.

Participant Control for Research

Informed consent, informed control, and informed trust, is important in research. We need to place importance on research participants having control over what is done. The concepts of Software Freedom can also apply to research, leading to a Research Freedom concept that concentrates more on participant control than researcher control. Research Freedom emphasises the importance that we need to place on the participants of research having control over the research that is carried out using their personal data. When this control is lost, bad things can happen. All it takes is one clueless PhD student (or professor); someone who didn't have the foresight to think through all the implications of their actions.

A Proposed Solution - Guidelines for Participant-driven Research

I believe it is necessary to reframe research as a task that emerges from discussion with participants, and will naturally lead to something that is given back to the participants of the research. To this end, I propose four key guidelines that help to make sure that research is carried out in a way that is agreeable to everyone involved:

1. Communication is Mediated

Projects must have an agreed academic mediator for the entirety of the research project. The role of this mediator is to communicate academic gobbledygook to study participants (or their representatives) in an understandable fashion (i.e. ensuring they are fully informed throughout the research project), but also to communicate participant concerns as soon as possible to the academic investigators.

2. Participants Maintain Control

While it is understood that a public disclosure is difficult (or impossible) to retract, participants should be able to otherwise maintain control over the biological samples, data, and results dissemination. An appropriate storage system should be set up in such a way that any participant can have their data excluded from results at any time. The aggregation of samples or data for academic efficiency, including separate management of sample and results control (e.g. biobanking), removes control from the participants and should not be recommended for a research project. A decentralised research project makes it easier for participants to have a say in what happens.

3. Consent is a Continual Process

Consent is enthusiastic, freely given, and continuous.

Researchers should be made aware that the initial ethical approval at the start of the study does not mean they have automatic approval for dissemination of results once the study is completed. Approval can be withdrawn by participants at any time.

Any public disclosure (or intended public disclosure) in any form must be be authorised by participants. This includes poster presentations, submission of manuscripts for peer review, conference abstracts, and public speaking events such as TEDx talks. Agreements made for blanket approval of public disclosure (e.g. “there is no need to approve every student presentation”) should not be allowed.

4. Study participants Are Informed

Researchers should be provided with an agreed method by which they can directly communicate research findings to study participants during the course of the research project (for those participants who are interested in knowing the results of studies). Examples of this could be in the form of invited attendance at participant gatherings, or a mailout of results.

Conclusion

Ethical research is about being as open as possible with everyone involved. All this amounts to quite a lot of work for both researchers and participants, and demonstrates how different the ethical landscape can be when you look at it from a different perspective.

But there’s no need to hurry with this. People are not going to disappear, and newer technologies will give us better capabilities to do research in the future.

I think it’s important to work through these issues, and make sure that research is done properly in a way that’s acceptable to everyone involved. This sometimes means listening to people who disagree with you, and maybe occasionally trying to take some of their suggestions on board. Because there’s an ocean of questions to be answered, and our best chance for finding the answers to the biggest questions in research is to make that journey together.

[This is a slightly abridged version of a post that can be found at https://gringer.gitlab.io/presentation-notes/2018/03/23/open-research/]

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