Participant-led research such as studies conducted via
social networks, are increasingly common and have several advantages over more
standard research but there are some concerns about their ethical oversight,
according to experts writing in PLOS
Effy Vayena from the University of Zurich in Switzerland and
John Tasioulas from University College London argue that the distinctive nature
of such participant-led research means that the standards of ethical oversight
should be adapted to strike a balance between protecting the interests of
research participants and achieving the promised benefits of this new type of
The authors say: "Participant led research is not only
potentially an exercise of personal autonomy and empowerment on the part of
those involved, it is also an avenue for pursuing research into topics that are
overlooked or sidelined by the scientific establishment."
They continue: "Yet, given how group dynamics may
develop, a concern that arises here is the inappropriate use of peer-pressure
to promote participation in a research project."
Three categories proposed
The authors argue that the ethical oversight should depend
on the type of participant led research and propose three categories, in which
category one has increased risk to participants and category three has minimal
They say: "We believe that this scheme merits further
discussion as one way of striking an appropriate balance between protecting the
interests of research participants and realizing the distinctive benefits of
participant led research."
The authors continue: "In this way, we might prevent
ethics review becoming a strait-jacket on participant led research inspired
innovation, stifling individual liberty, and serving as a disincentive to
non-experts who might otherwise make valuable contributions to medical
Vayena and Tasioulas conclude: "Failure to adequately
address this issue, and to generate consensus on best practice, poses a threat
of harm to participants, risks undermining the credibility of participant led
research, and may eventually provoke a backlash of over-regulation that
deprives us of its potential benefits."