Christi Guerrini, instructor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine, has been awarded the Research Scientist Development Award from the National Institutes of Health to support her study of citizen science. Totaling more than $600,000 over the course of four years, the grant will support training and research in ethics, genomics, qualitative research and conjoint analysis.
“The traditional research paradigm gives researchers most, if not complete, power over a study’s design, execution and results, with subjects’ involvement usually limited to only providing information or samples,” explained Guerrini. “In citizen science, power is more evenly distributed. The research subject becomes a collaborator in the research process and is more invested in the results and implications.”
Citizen science is closely related to three movements in medicine and research: patient empowerment initiatives that seek to more fully engage patients in their own healthcare; patient-centered outcomes research directed at addressing issues that are priorities to patients and their caregivers; and community-based participatory research focused on understanding the needs of and providing direct benefits to the communities in which research participants live.
With a background in intellectual property law and public health, Guerrini will investigate whether citizen scientists involved in genomic research have legitimate claims and interests in the outcomes of studies in which they participate.
“I’m looking to answer three key questions through this research. First, do citizen scientists have rights related to when, where, how and to whom study results are disclosed? Second, should they receive public credit for their contributions? Third, what are their rights related to patenting, commercializing and licensing discoveries made during the course of studies?” said Guerrini.
To examine these ownership issues, Guerrini will begin with a full legal and ethical analysis, followed by interviews with participants to determine their values and preferences.
“Citizen science is the future of research,” said Dr. Amy McGuire, director of the Center. “The results of Christi’s work will be very meaningful to policy at all levels and will help shape best practices in research studies moving forward.”
Guerrini’s analysis will provide valuable insight into how citizen scientists can be supported throughout the research process. “As a society, we want people to want to participate in studies. This project will help develop practices and policies that respect the rights and interests of everyone involved in citizen science initiatives,” said Guerrini.