While the information posted to online health discussion boards might be useful for researchers, even those who post can't agree on the level of consent required to use that information.
In interviews with 26 participants on a diabetes discussion board, they stressed the need for patients' views to be heard in research, according to the study published at the Journal of Medical Internet Research.
While they agreed that what they wrote was in the public domain, they disagreed on whether researchers could quote them without their consent. On the other hand, they had few problems with the use of aggregated data derived from the boards.
On quotations, some wanted to be able to give or withhold consent, while others wanted their words to remain confidential and wanted to ensure their words would not be traced back to them.
Tracking down posters to obtain consent, however, could be difficult or even impossible. Since comments are made in the context of discussion, if one person gave permission to be quoted while another did not, that information might not be useable.
The authors then propose the use of "aggregated" quotations that convey the meaning without using any one writer's exact words, which would seem to be the same as paraphrasing.
Researchers have shown that research using social media can be beneficial, such as tracking flu and cholera through mentions on Twitter. Those efforts have led to forecasting to help officials better prepare as outbreaks proliferate.
However, Jeffrey Kahn, the Levi Professor of Bioethics and Public Policy at the Johns Hopkins Berman Institute of Bioethics, argues that online research requires a high level of transparency.
"[The web] 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," he wrote recently.
In a recent study published in PLOS Medicine, researchers propose three models for ethical oversight for "participant driven" or "crowdsourced" research based on the potential harm to participants, but assert that "like any form of scientific research involving human participants it is subject to ethical as well as scientific standards of appraisal."
To learn more:
- read the study at JMIR