Biomedical Citizen Science: Emerging Opportunities and Unique Challenges

Biomedical research poses unique opportunities for citizen science to contribute to understanding the biology underlying health and disease, the impact of behavior and the environment on health, and individuals’ personal and... [ view full abstract ]

Biomedical research poses unique opportunities for citizen science to contribute to understanding the biology underlying health and disease, the impact of behavior and the environment on health, and individuals’ personal and collective health. But it also poses unique challenges for citizen science. Individuals, some either already diagnosed or predisposed to a disease, are motivated both to share clinical information about themselves and to shape future research directions that will benefit others with their condition. In addition, there exists a wealth of expertise and creative problem-solving capabilities outside the realm of traditional biomedical research expertise that can be brought to bear on biomedical research questions, currently most commonly through game interfaces. The National Institutes of Health (NIH) supports all aspects of biomedical science including biological, clinical, behavioral, and epidemiological research. We are investigating the use of citizen science methods for biomedical research. In May of 2013, our working group brought together from the non-profit, for-profit, and academic sectors who had successfully run biomedical citizen science projects for a think tank. This workshop highlighted many opportunities to bring the public’s passion, time, data, and sharing of ideas to change the paradigm of biomedical research and redefine the current relationships between physicians, academic centers, and the public. Two additional workshops planned for this winter follow up on key recommendations and areas of opportunity: investigating the ethical, legal, and social implications (ELSI) of citizen science biomedical research; and the use of games for biomedical research. This panel will include reports from those workshops and the think tank, and will focus on how those issues impact citizen science biomedical research from NIH’s perspective and the unique opportunities for these approaches in the biomedical space. Presenters could include leaders of these activities from the NIH as well as experts from the field.