Interviews

• Our research team has conducted several qualitative interview studies with leaders, participants, and scholars of biomedical citizen science. Here are our standard methods for conducting these interviews.

• Recruitment: We identify candidate interviews who we believe will be knowledgeable about the topics of interest based on the published literature, media reports, information from contacts, and snowball sampling. In snowball sampling, participants identify other persons with relevant knowledge during their interviews. Candidates are invited to participate via email or, when circumstances allow it, in person.

• Interviews: We conduct interviews via telephone, Zoom, and in person. Interviews are typically semi-structured, meaning that they are guided by a set of interview questions but leave room for follow-up questions and discussion of topics raised by interviewees. Interviews are conducted with consent. Interviewees are informed that that they can skip any questions and end the interview at any time. At the conclusion of each interview, we offer payment to the interviewee for their time.

• Coding and Analysis: Interview transcripts are professionally transcribed and reviewed by our research team for errors.

  Next, the team develops a preliminary “codebook” of relevant themes based on review of a subset of transcripts. The preliminary codebook is tested with a different subset of transcripts and revised as necessary. This process is repeated until the team agrees on a final codebook.

  At that point, each transcript is coded independently using the final codebook by at least two members of the research team. Codes are reconciled by the two coders and any disagreements are resolved by consensus. If necessary, a third member of the research team helps facilitate resolution. 

  Finally, code “reports” are generated and reviewed by the entire research team for identification, organization, and reporting of major findings.   

Read the interview guides.

Landscape Methods

In 2017-2018, we a conducted a landscape analysis of the ownership-related practices of genomic citizen science initiatives. Criteria for inclusion in the study were established and initiatives meeting those criteria were then identified from the published literature, website searches, and other research activities. For each initiative in the dataset, the project team searched for publicly available information regarding its organization, features, and policies and practices for managing participants’ ownership interests in research outputs. We then recorded and organized findings from analysis of the information collected for each initiative.

Experimental Methods

In 2020, we conducted a survey with an embedded “best-worst scaling” experiment to identify the ethical issues that are most concerning to citizen scientist practitioners, participants, and scholars.

The ethical issues included in the experiment were identified from a master list of issues generated during a 2017 interdisciplinary workshop titled “Filling the ‘Ethics Gap’ in Citizen Science.” After constructing the survey, we piloted it with 15 participants in the 2017 workshop.

Based on this feedback, we revised the survey. The final survey was programmed in Qualtrics and respondents were recruited with the help of the Citizen Science Association. Data analysis was conducted with STATA IC (StatCorp, College Station, TX).

This page gives an overview of our methods. Want to know more about this process? Each paper linked on this site has a detailed methodology section.