Research, discussion, and opportunities at the intersection of law, ethics, independent science, and innovation
Our own research relevant to biomedical citizen science is ongoing and has considered questions such as…
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.
What are core values of biomedical citizen scientists?
Understanding the values that biomedical citizen scientists associate with their activities and communities can help predict behavior, which in turn can be useful in risk assessments of and policy development for biomedical citizen science.
What ethical oversight mechanisms best align with the priorities and preferences of biomedical citizen science communities?
The ethical oversight of “bottom-up” biomedical citizen science projects is a matter of concern because the federal rules that require ethical oversight of research generally do not reach such projects, creating what has been called an “ethics gap” in citizen science. The ethics attitudes and oversight preferences of biomedical citizen scientists can be useful in evaluating mechanisms that have been proposed to fill this gap.
How should biomedical citizen scientists recognize claims to ownership?
The perspectives of biomedical citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying misalignment of participant expectations and project practices and can help guide efforts to develop strategies for managing ownership claims.
What regulations apply to biomedical citizen science?
Biomedical citizen science is not outside the scope of existing laws and regulations, yet grey areas persist.
What legal and ethical issues are raised by biomedical citizen science projects focused on COVID-19 solutions?
During the COVID-19 pandemic, biomedical citizen scientists around the world have engaged in research with the objective of contributing to preventative, diagnostic, and therapeutic solutions. Some of these activities raise legal and ethical questions about the perils and possibilities of DIY medicine and independent biotechnology.
Closing the Ethics Gap
As biomedical citizen science initiatives become more prevalent, the unique ethical and legal issues they raise are attracting attention from regulators, policy makers, and the public. We set out to understand what’s at the heart of the biomedical citizen science community, what it hopes to achieve, and what motivates independent scientists.
We interviewed dozens of biomedical citizen science leaders, participants, and facilitators over the course of two years.
“We don't want people making ethical decisions because they fear retribution.
We want people making ethical decisions because they decide it's the right thing to do.”
— Interviewee and biohacker