'Direct to consumer' research (using data obtained through increasingly popular online communities) has known methodological limitations (including selection bias, information bias, and confounding), which means that that results and conclusions of research using these methods need to be interpreted with caution. However, these limitations are not always communicated to participants and the authors argue that the findings of research should be communicated in a way that is understandable, accurate, complete, and not misleading.
Cecile Janssens from the Erasmus University Medical Center in The Netherlands and Peter Kraft from the Harvard School of Public Health explain that such studies, relying on collection of self-reported data by self-selected participants, raise critical questions that require further ethical analysis and public debate – for example regarding the provision of adequate consent, the safeguarding of public trust, disclosure of commercial development of research results, and the sale of participants' data to third parties.
The authors say: We worry that overstating the conclusions that can be drawn from these resources may impinge on individual autonomy and informed consent."
They conclude: "Only a responsible approach with realistic expectations about what can be done with and concluded from the data will benefit science in the long run."
The authors argue that clarity regarding the benefits of research using solicited personal data is particularly important when the data collected are also used for other purposes, such as selling participants information to pharmaceutical and insurance companies.
The authors comment further: "The potential for sharing participants' data with third parties as well as the commercial uses of research findings should be disclosed more explicitly to participants prior to consent."
Funding: This study was supported by the Centre for Medical Systems Biology (CMSB) in the framework of the Netherlands Genomics Initiative (NGI). ACJW Janssens was sponsored by the VIDI grant of the Netherlands Organisation for Scientific Research (NWO). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing Interests: The authors have declared that no competing interests exist.
Citation: Janssens ACJW, Kraft P (2012) Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations. PLoS Med 9(10): e1001328. doi:10.1371/journal.pmed.1001328
IN YOUR COVERAGE PLEASE USE THIS URL TO PROVIDE ACCESS TO THE FREELY AVAILABLE PAPER (THIS LINK WILL BECOME LIVE WHEN THE EMBARGO LIFTS):
http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
CONTACT:
A. Cecile J. W. Janssens
Rollins School of Public Health
Emory University
Atlanta, Georgia, United States of America
cecile.janssens@emory.edu
PLOS Medicine