Ethical considerations of using community-led media in engagement around biomedical research

Author: Mary Chambers, Oxford University Clinical Research Unit, Vietnam

Co-authors: Gill Black, Alun Davis, Joanna Wheeler

Participatory methods are regularly employed in development and engagement activities because they are accepted to be sensitive to the needs of communities whilst promoting their deeper involvement and a sense of ownership of issues and solutions being addressed. Community generated, or led, media (CLM) such as photo voice, participatory film and video diaries, has been used within the development sector for well over 30 years. Recently we are seeing it used increasingly within engagement with health research programmes in developing country contexts. Despite wide use of participatory community media the conversation around ethics and the use of these methods is still young. Bringing these methods into the context of health research raises further ethical questions.

CLM is said to enable the expression of opinion and sharing of experiences. This is assumed to be empowering, particularly when used with vulnerable groups who may not have a voice in their communities. Apart from the assumed cathartic and empowering benefits of the process, CLM may also be used as an advocacy tool, since the media outputs, in the form of photographs, photo stories or film, can portray personal stories in a more emotive and meaningful manner than text perhaps can.

Despite its potential, the use of CLM for social research or engagement raises fundamental ethical questions especially around anonymity and consent.

Through this discussion a group of practitioners and academics will explore the ethical issues that arise when communities generate media to tell their stories, and share examples and practice from a range of research settings. The panel will describe a diverse use of participatory digital approaches including: Participatory video in evaluating engagement between researchers and schools in Kenya; Consent in CLM processes: an ongoing issue viewed from a South African perspective; Ethical issues in the use of CLM in a Vietnamese context.