How do biomedical citizen scientists self-identify?
As biomedical citizen science grows in popularity, there is disagreement about what terms should be used to describe its activities and participants. The question of how to self-identify has important ethical, political, and practical implications because self-identification preferences reflect and project a common ethos and can shape behavior.
How biomedical citizen scientists define what they do: It’s all in the name
As citizen science continues to grow in popularity, members of citizen science sub-groups disagree about what terms should be used to describe citizen science activities and participants, including those working on biomedical research. As a whole, members of the citizen science/community bio/DIYbio/biohacking movements do not have a preferred terminology when they refer to themselves or the larger movement.
Often, community members embrace or avoid terms based on whether they convey respect, provoke a reaction, or are inclusive. The question of how to self-identify has important ethical, political, and practical implications to the extent that shared language reflects a common ethos and goals and shapes behavior.
We interviewed 38 leaders, facilitators, and participants in biomedical citizen science projects over six months and asked them to describe themselves and their work.
Please cite this paper as: Meredith Trejo, Isabel Canfield, Jill O. Robinson, Christi J. Guerrini. How Biomedical Citizen Scientists Define What They Do: It’s All in the Name, 12 AJOB EMPIRICAL BIOETHICS 63 (2021).
Biomedical citizen science or something else? Reflections on terms and definitions
Typologies are helpful for understanding the complex landscape of health and biomedical citizen science initiatives.
Although the purpose of typologies is to describe categories, not specify definitions, the use of any typology is necessarily based on judgments about the kinds of activities that qualify for categorization in the first place. But these judgments are almost never straightforward and can have important practical, regulatory, ethical, and political dimensions. In this paper, we expand on previous typologies by identifying some of these judgments, reflecting on their implications, and discussing some of the challenges that are associated with any effort to characterize the biomedical citizen science landscape.
Please cite this paper as: Christi J. Guerrini, Anna Wexler, Patricia J Zettler, Amy L. McGuire. Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions, 19 AM. J. BIOETHICS 17 (2019).
How do biomedical citizen scientists define themselves?
Biohacker
Do-it-yourself biologists who conduct experiments (including self-experiments) and develop, modify, and tinker with biotechnologies. Sometimes distrustful of traditional scientific institutions.
Community Scientist
Leaders and members of community laboratories that are part of a global collaborative network. Often also participants in the movement for social justice in the life sciences.
Grinder
Body modification enthusiasts who implant themselves with cybernetics in hopes of enhancing their senses and other capabilities. Sometimes also identify as transhumanists.
Lifehacker
Individuals who track their health measurements and adjust their behaviors to change trends in the data, with the goal of addressing health conditions or optimizing their health. Sometimes also members of the Quantified Self movement.
Academic Citizen Scientist
Individuals employed by traditional scientific institutions who use institutional resources to support or conduct research that prioritizes engagement with lay participant contributors.
Entrepreneur
Founders and managers of life sciences and biotechnology companies that support citizen science objectives of openness and inclusivity in the life sciences.