Ethical oversight necessary for participant-led research

Online social networks have been used for regulating personal health and for research, but ethical oversight is necessary for continued health research that will make an impact, according to a recent study published in PLOS Medicine.

As the study's authors point out, participant-led research--often described as "participant driven," "crowd sourced," or "participant centric" research--has appeared in top biomedical journals, calling into question the requirements for ethical oversight. They list six areas of probable relevance for ethical oversight for what they've generalized as participant-led research (PLR): institutionalization, state recognition and support, incentive structures, openness, bottom-up approach and self-experimentation.

"PLR is not only potentially an exercise of personal autonomy an 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," the authors say.

They contend that the most important justification for ethical research with people is to protect research participants. "Can PLR achieve the scientific rigor needed to complement standard health research?" the researchers ask. "And, if so, how can it be conducted ethically?"

Giving examples of different types of past PLR, the authors propose three different categories of ethical oversight. Category one includes PLR "carried out by agents that satisfy the "institution-plus" criterion, i.e., they are institutions that are either state-recognized, even if not state-supported, or are engaged in profit-making." Category two is for research that involves more than minimal risk to participants, and proposes possibly using crowd-sourcing for ethics review. Category three proposes that no ethical review is required if the research doesn't pose more than minimal harm to participants.

The authors conclude that "PLR holds out the alluring prospect of citizen engagementin the co-production of knowledge with the scientific community. But like any form of scientific research involving human participants it is subject to ethical as well as scientific standards of appraisal."

In late February an essay published in Science Translational Medicine discussed the question of if researchers can ethically use health information that people openly reveal about themselves online. Study author Jeffrey Kahn of JohnsHopkins said in the essay, while the web is dense with information, it "should not be turned into the Wild West of health research; rather, its unique features must be used to effectively and creatively satisfy the ethical requirements of the research consent process."

To learn more:
- read the study in PLOS Medicine

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