How Biomedical Citizen Scientists Define What They Do: It’s All in the Name

Abstract

Background

As citizen science continues to grow in popularity, there remains disagreement about what terms should be used to describe citizen science activities and participants. 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. Biomedical citizen science in particular has come to be associated with terms that reflect its unique activities, concerns, and priorities. To date, however, there is scant evidence regarding how biomedical citizen scientists prefer to describe themselves, their work, and the values that they attach to these terms.

Methods

In 2018, we conducted semi-structured interviews with 35 biomedical citizen scientists in connection with a larger study to understand ownership preferences. Interview data were analyzed to identify the terms that interviewees used and avoided to describe themselves and their work, as well as the reasons for their preferences.

Results

Biomedical citizen scientists self-identified using three main terms: citizen scientist, biohacker, and community scientist. However, there was a lack of consensus among interviewees on the appropriateness of each term, two of which prompted conflicting responses. Self-identification preferences were based on personal judgments about whether specific terms convey respect, are provocative, or are broad and inclusive, as well as the desirability of each of these messages.

Conclusions

The lack of consensus about self-identification preferences in biomedical citizen science reflects the diversity of experiences and goals of individuals participating in this field, as well as different perceptions of the values signaled by and implications of using each term. Heterogeneity of preferences also may signal the parallel development of multiple communities in biomedical citizen science.

Keywords:

• citizen science
• biohacking
• DIY biology
• qualitative research
• empirical research

Background

Citizen science is generally defined as “public participation and collaboration in scientific research to increase scientific knowledge” (National Geographic, n.d.) and has a long history of contributions to the natural and social sciences. In recent years, the internet has made citizen science efforts more visible and opened up new ways to create, share, and analyze project protocols, data, and results (Bonney et al. 2014). Biomedical citizen science efforts in particular have benefited from the digitization and increased accessibility of health-related data and tools for biologic research. Biomedical citizen science is distinguished from other subfields of citizen science by the nature of its activities, which can include self-experimentation, as well as its generation and use of potentially highly sensitive personal data. In addition, biomedical citizen scientists often work in diverse, nontraditional scientific settings that include community and home laboratories (Guerrini, Spencer, and Zettler 2018; Wiggins and Wilbanks 2019).

As citizen science grows in popularity, there persists a lack of consensus about the best way to describe participants in citizen science or their activities (Shirk et al. 2012; Prainsack 2014; Bonney et al. 2016; Wiggins and Crowston 2011; Wiggins and Wilbanks 2019). Eitzel et al. (2017) identified over a dozen different terms for citizen science actors, nuances in the meanings associated with these terms in various countries, and caveats about how they might be misinterpreted or offend. For example, the term citizen science is itself contested due to political connotations of the word “citizen,” which might be interpreted to reject participation by non-citizens (Ceccaroni, Bowser, and Brenton 2017; Eitzel et al. 2017). As another example, use of the term volunteer scientist might devalue participants’ skills or contributions (Eitzel et al. 2017).

In recent years, specific terms have emerged to describe biomedical citizen scientists, such as biohacker, do-it-yourself (DIY) biologist, biopunk, biocitizen, and bioactivist (Guerrini, Wexler, et al. 2019; Sanchez Barba 2014), but these have also proven problematic. One reason is that biomedical citizen science is perhaps uniquely associated with concerns about safety, ethical values such as autonomy, and community norms that emphasize openness and self-regulation. The terms used to describe those who engage in this work can therefore have heightened ethical and political implications to the extent they influence how the public and policymakers perceive and respond to their work and how biomedical citizen scientists engage with these outside interests and each other (Guerrini, Wexler, et al. 2019). A further ethical concern is that terminology can deliberately or inadvertently be used in ways contradictory to the participatory ethos that is said to be a hallmark of citizen science and in this way can undermine objectives to facilitate the democratization of knowledge production.

To date, there is little empirical evidence about how individuals engaged in biomedical citizen science feel about the terms that are used to describe them. To our knowledge, only one study has reported attitudes toward terminology in biomedical citizen science (Sanchez Barba 2014). In interviews with seven individuals involved in the DIY biology movement, all outside the United States, one scholar found disagreement about appropriate usage of two terms: DIY biologist and biohacker.

Here, we expand on this study by reporting findings from semi-structured interviews with 35 individuals who participate in biomedical citizen science regarding the terms that they use to describe themselves as participants in citizen science and the reasons for and implications of their preferences.

Methods

This paper presents a subanalysis of interview data that were collected to understand priorities and strategies relevant to ownership of research outputs in biomedical citizen science. Full details of the sampling approach and coding methodology are described in a companion article that describes values endorsed by interviewees (Guerrini, Trejo, et al. 2019). A total of 38 interviews were conducted for the parent study; this subanalysis is based on data from 35 interviews. The three excluded interviews involved academics who only studied citizen science activities and did not participate in them personally.

Briefly, interviewees in the subanalysis were participants, leaders, or facilitators of biomedical citizen science efforts and were identified through a landscape analysis (Guerrini, Lewellyn, et al. 2019), snowball sampling, and related research activities. Two authors (MT, CG) trained in qualitative methodology conducted interviews using a semi-structured interview guide. All interviews were conducted in person or by telephone, were audio-recorded with permission, and professionally transcribed. Interviewees were provided $75 compensation at the conclusion of the interview. Interviews in the subanalysis ranged from 23–68 minutes; the mean was 49 minutes.

The subanalysis focuses on responses to two questions that were asked at the beginning of every interview: “What do you call yourself or the work you do–citizen scientist, biohacker, or something else?” and “What term do you prefer we use [in the interview]?” Interviewees were allowed to self-describe using multiple terms but were encouraged to choose one term to use for the remainder of the interview. Interviewees were also probed about their reasons for choosing to self-describe, or choosing not to self-describe, using the terms that they identified. One member of the research team (MT) recorded all terms identified by each interviewee and coded each term as accepted or avoided by the interviewee, as well as the interviewee’s reasons for accepting or avoiding each term, at times in consultation with other members of the research team (IC, JOR, CG). Based on the coded data, the research team identified salient themes using content analysis (Downe‐Wamboldt 1992).

Results

Interviewees

Between August-December 2018, 64 individuals were invited to participate in the parent study and 38 individuals completed interviews, for an overall response rate of 59%. Of the 35 interviewees considered in this subanalysis, interviewees were primarily male (n = 26, 74%) and over half were 18–39 years old (n = 19, 54%) at the time of interview (Table 1). Further, almost half of interviewees resided in the Western United States (n = 16, 46%) and more than half had obtained a graduate or professional degree (n = 24, 69%). Interviewees described participatory roles in biomedical citizen science (including but not limited to genomic citizen science) that encompassed study participant, project organizer, and community, laboratory, and business leader. Many interviewees described participating in multiple capacities (e.g., study participant and project organizer) in research settings that included home, community, and university laboratories, as well as online.

Table 1. Characteristics of interviewees (N = 35).

Characteristic	Number interviewed (%)
Gender
Male	26 (74%)
Female	8 (23%)
Gender non-conforming	1 (3%)
Age
18–39	19 (54%)
40–69	16 (46%)
Region^1
U.S. Northeast	7 (20%)
U.S. South	10 (29%)
U.S. West	16 (46%)
International	2 (6%)
Highest level education
High school diploma/GED	4 (11%)
College graduate	7 (20%)
Graduate/professional degree	24 (69%)

Percentages may not add up to 100% due to rounding.

¹ As defined by U.S. Census Region

Self-description preferences

Interviewees reported 13 terms to describe either the activities they engaged in or to describe themselves as an individual participating in those activities. The terms interviewees most frequently endorsed were citizen scientist (n = 15, 43%), biohacker (n = 8, 23%), and community scientist (n = 7, 20%) (Table 2). A majority of individuals that endorsed the term citizen scientist (n = 10) were primarily involved in analyzing or manipulating genetic or other biomedical data, as opposed to conducting wet laboratory research or human experimentation. All interviewees who endorsed the term community scientist were leaders of or project organizers working in community or other public laboratories.

Table 2. Terms most frequently identified by interviewees.

Term	Interviewees endorsing term, n (%)	Interviewees avoiding term, n (%)	Example of term used in context
Citizen scientist	15 (43)	7 (20)	“Citizen science as a term, it's an interestingly broad umbrella, in that it often refers to stuff that takes the form of sort of crowdsourcing . . . . When it comes to working with personal information and human subjects research I think it really has an interesting shift in that the people being studied want to be involved in how that study is occurring, what is going to happen in that study. I see that as within human subjects research, citizen science becomes this much more engaged entity.” (008)
Biohacker	8 (23)	6 (17)	“The thing is most biohackers aren't trying to collect data. They're trying to build things.” (001)
Community scientist	7 (20)	0 (0)	“And when we say community science, we have our community scientists who are participating intellectually in the scientific process.” (002)

At the same time, interviewees specifically described avoiding or having negative feelings toward or perceptions of two of those same terms: citizen scientist (n = 7, 20%) and biohacker (n = 6, 17%). However, three interviewees who generally rejected the term biohacker also described instances when they chose to use that term. Ten additional terms were endorsed by 16 interviewees: DIY biologist, participatory scientist, amateur scientist, scientist, medical altruist, personal genomics participant, self-learner, Quantified Selfer, volunteer, and advanced [professional specialty] (for example, advanced geneticist).

Notably, some interviewees described indifference about any term used to describe their work. For example, one interviewee explained his general ambivalence as follows: “To me, it is what it is regardless of what you call it” (005). Similarly, another observed that “everybody uses a different term, and I think that's fine,” concluding: “I hate using definitions” because “[t]he second you agree on it, something else comes along and it's worthless” (012).

Other interviewees had difficulty defining the boundaries of terms or challenged perceived boundaries, which sometimes impacted their ability to identify with a specific option. One interviewee questioned whether it is appropriate to self-describe using certain terms in the context of for-profit activities, asking, “by the time you’ve set up a company, are you still a citizen scientist? I don’t know” (026). Another participant believed that financial or market considerations do play a role in defining these boundaries: “I think the [biohacker space] took in over a million dollars this year. So, they cannot really call themselves a biohacker space at this point” (017). Other participants expressed frustration that the terms biohacking, transhumanism, and life hacking are often used interchangeably because, in their opinion, the activities that these terms describe are very different.

Reasons for preferences

Interviewees explained that they chose to use or avoid certain terms to describe themselves or their work for three key reasons: they convey respect, are provocative, or are broad and inclusive.

Respect

Many interviewees explained that they endorsed specific terms to describe themselves or their work because they felt those terms convey respect. For example, two interviewees endorsed the term scientist because they did not believe that their work needed to be distinguished from traditional scientific endeavors. In fact, one interviewee contended that traditional scientific institutions are “the ones that need qualifiers in my mind” (024). Two different interviewees embraced the term amateur scientist as a nod to norms in the 19th century, prior to the professionalization of science, when almost all scientific work was conducted by so-called amateurs, who were widely respected (Miller-Rushing, Primack, and Bonney 2012). They felt this term conveyed that, although they were not professional scientists, they were engaging in serious “passion project[s]” (015) that showcased their love of science. At the same time, they acknowledged that the word “amateur” could be misunderstood by others as meaning “novice or incapable” (015).

Other interviewees discussed using terms related to participatory science and research to describe their collaborations with traditional scientific institutions because those terms emphasize the degree of their engagement in and control of projects. For example, one interviewee explained her use of the term community scientist to describe individuals that “participate intellectually” in projects (002) and do not only contribute data. On the other hand, some interviewees rejected terms related to participatory science because they believed such terms are sometimes used inappropriately to falsely signal respect for participants that is not borne out in studies. Specifically, they expressed concern that some institutional researchers exploit these terms to give the appearance of robust engagement by patients who in fact have little say in the study. To them, projects deserve the participatory label only if they promote “reciprocity and equity” (008) in the research process.

Notably, no interviewee said that they used the term citizen scientist because it conveys respect. However, some interviewees explained that they avoided this term because it does not convey respect. Specifically, they believed the term trivializes their contributions and “implies individuals can't do the same science that an actual scientist can because they're citizens and not real scientists” (001). According to these interviewees, “science is science” (015), but terms like citizen scientist encourage others to view their scientific work as less serious or rigorous than scientific efforts conducted in traditional institutions. A priority for these interviewees was for others within their own communities, as well as members of the larger scientific community, to appreciate the technical quality and innovative potential of their efforts.

A second concern that led interviewees to avoid the term citizen scientist was its potential to confuse their activities with other subfields of citizen science that, in their view, minimize the intellectual contributions of non-institutional scientists. Whereas citizen science is often associated with “people donating their data to a bigger picture for an institutional researcher to kind of do what they will with” (027), their work was about “building the type of community where people are active participants” (007). As members of these kinds of communities, interviewees described their experiences setting research agendas, developing scientific protocols, and collecting and managing scientific data that they might also have helped analyze and report. In a similar vein, some interviewees connected their terminology preferences to fears of exploitation by those in power. Thus, one interviewee explained rejecting the term volunteer because “there’s a lot of cultures where volunteering actually means indentured servitude” (002).

Provocative

While almost one quarter of interviewees embraced the term biohacker because it is provocative, others avoided the term for the same reason. Interviewees who endorsed biohacker explained that they felt the term is eye-catching and has “a nice flavor” (010) or “particular feel” (026). These interviewees further explained that biohacker is consistent with their goals of disrupting traditional scientific structures and norms related to knowledge creation, as well as promoting open science:

People focus on the community and I think that's right but sometimes they say “community-driven science.” Personally, I don't think it provokes enough and I like biohacking and hacker for its ability to cause that kind of reaction. And usually you don't get a change without some sort of reaction or provocation. (027)

Several noted the parallels between their scientific work and the disruptive work of computer hackers involved in the open source software movement, an analogy that they believed is promoted by their self-description as biohackers.

But other interviewees explained that they avoided the term biohacking because of concerns that it is associated with “fringier kinds of activity” (021), “a lot of negative press” (017), and “negative connotations” (012). To them, the term biohacker suggests engagement in unsafe or reckless behavior. Although some of these interviewees shared a common goal of disrupting traditional scientific structures, they feared that, because of this association, self-identifying as biohackers might provoke regulation and more generally might “prevent the attainment of the legitimacy that the movement needs long-term to survive” (003). They therefore chose to self-identify using less controversial terms.

Interestingly, some interviewees fell somewhere in the middle of these extremes. That is, they selectively used or avoided the term biohacker depending on the audience and their objectives. Thus, with the general public, they might use terms like citizen scientist or community scientist to avoid negative perceptions of their work. In other situations, they might use those terms, rather than biohacker, to avoid associations with body or performance hacking, which was described as “outré” (010), or to transhumanism, which is animated by a different set of beliefs and research priorities. On the other hand, some interviewees described strategically referring to their work as biohacking to attract individuals to their communities. One interviewee who no longer used the term biohacker acknowledged that, at least initially, it “was useful for rallying people” (003).

Inclusive

Finally, the term citizen science was endorsed by some interviewees because it is a broad and inclusive term. In discussing values associated with their work, many interviewees described a vision of democratizing science and expanding access to scientific tools, data, and research findings. Interviewees explained that describing their work as citizen science underscores its inclusivity because that term is “a touchstone that everyone can really understand and appreciate” (023). In a similar vein, one interviewee explained his preference for the term he felt was broadest—amateur scientist:

[E]very single label of whatever it is that we're doing, is labeled as, has certain connotations and expectations, more importantly, limitations. I try to go based off of the label that seems to be the most all-encompassing, which is amateur science. (015)

Yet, some participants objected to the use of the term citizen science on grounds that it is exclusive, not inclusive. Of note, citizen science was the only term avoided for this reason. For example, one interviewee acknowledged that citizen science is a widely used term, but worried that it might discourage participation given “the politics of what citizenship looks like” (023). Another interviewee described renaming their laboratory from a “citizen lab” to a “community lab” specifically so as not to “exclude non-citizens from the lab” (031). These sentiments were consistent with interviewees’ stated commitments to provide opportunities for anyone with an interest in science to participate in citizen science and have access to tools, data, and results:

So to do science in new ways that engages individuals, I think is a better way to do science than the way that we have done it, which has historically been more closed. More of an insider's game, if you will. I think of participatory or community-engaged science as being something that not only invites participation, but it is likely to promote more powerful and impactful science. Because not only do you have other critical voices helping to shape the questions and the project, which can make the science better, but you have a mechanism whereby you're giving science back. (013)

Discussion

Interviewees in our sample identified 13 different terms to describe actors in biomedical citizen science. Although no single term was favored by a majority of interviewees, three terms were most frequently endorsed: citizen scientist, biohacker, and community scientist. At the same time, the terms biohacker and citizen scientist were most frequently avoided by interviewees. Three main reasons emerged as influencing interviewees’ choice of terminology: its ability to show respect, be provocative, or convey inclusivity.

The lack of consensus about terminology among biomedical citizen science communities aligns with the lack of consensus about preferred terminology for participants in the larger citizen science community. For example, Eitzel et al. (2017) identified at least 17 different terms for citizen scientists, and Ceccaroni, Bowser, and Brenton (2017) cited nine different definitions of the single term citizen science. By contrast, the computer hacking community (to which biohacking is often compared) has developed more consensus around the use of specific terms to describe participants. For example, the term “hacktivist” is generally understood to refer to hackers that have a political motivation behind their work (What is Hacktivism?, n.d.).

Biomedical citizen science communities have been described as diverse, not well defined, and lacking cohesiveness, which may explain the lack of consensus, and in some cases strong disagreement, about preferred terms and motivations for choosing them. The diversity of preferences also likely reflects the development of distinct biomedical citizen science communities, potentially aligned around the terms citizen scientist, community scientist, and biohacker. This is evidenced by the emergence of various conferences geared toward these communities—for example, Biohack the Planet for biohackers and the Global Community Bio Summit for community scientists—which might have the effect of further solidifying different identifies. Relatedly, terminology preferences might reflect the breadth of experiences of individuals in various biomedical citizen science projects and communities, as well as their scientific training. Fiske et al. (2018, 2) describe kinds of participation “ranging from minimally-participatory pursuits … to more radical initiatives seeking to emancipate biomedical research.” Evans (2019, 15) notes that the diversity of participants’ scientific training can “mudd[y] attempts to distinguish citizen and professional scientists based purely on their scientific credentials.”

For some interviewees, terminology served an explicitly political purpose. Some biomedical citizen scientists have strong political motivations, which might distinguish their projects from others in citizen science, where participants report egoism and personal benefits as primary motivations (Rotman et al. 2012; Eveleigh et al. 2014). Interviewees in our sample discussed political motivations in terms of democratization of science through access and inclusion, as well as a rejection of the word “citizen” due to political tensions associated with citizenship. As Kelty (2010, 4) observed, these are individuals that “critique the system through action.”

Interviewees also explained that terminology reinforces and operationalizes other shared objectives and ethical priorities. Thus, terms perceived as conveying respect are consistent with the objective of doing “good science” and validate interviewees’ emotional and physical investment in their work. This was the motivation, for example, for some interviewees’ self-description as amateur scientists. As reported elsewhere, respect for biomedical citizen scientists and the scientific contributions of their communities is a core value in biomedical citizen science (Guerrini, Trejo, et al. 2019).

Other preferences reflect ethical commitments to autonomy, freedom, and radical openness, which also have been identified as biomedical citizen science values (McGowan et al. 2017; Guerrini, Trejo, et al. 2019). Biomedical citizen scientists conceptualize autonomy and freedom as the ability to “pursue their own interests” (Sanchez Barba 2014, 33) and conduct the type of research they want to do, including self-experimentation, even when it is in tension with traditional scientific priorities or expectations. Radical openness reflects a desire to “disrupt the traditional hierarchy of knowledge production, organization, and control in the laboratory” (McGowan et al. 2017, 505). Interviewees’ endorsement of provocative terms is consistent with the message that they wish to be free of institutional requirements and norms. On the other hand, broad and inclusive terms align with values of openness and inclusivity that are grounded in a mission to democratize access to biomedical education and research opportunities, tools, and results (Sanchez Barba 2014; McGowan et al. 2017; Guerrini, Trejo, et al. 2019).

Finally, interviewees identified the instrumental value and practical effects of their choice of terminology. They believed that certain terms influence the public’s perception of their activities, which in turn can impact their ability to continue them. Concerns about the possible enactment of policies targeting biomedical citizen science have been noted elsewhere (Blazeski 2014; Zettler, Guerrini, and Sherkow 2019) and are borne out by recent policy events. Specifically, following completion of this study, a prominent biohacker was investigated by the California Board of Consumer Affairs for practicing medicine without a license (Regalado 2019a). Several months later, California legislators passed a law imposing new labeling requirements for DIY gene editing kits (Regalado 2019b).

This analysis is subject to several limitations. First, as with all qualitative research, the results are not generalizable and might not reflect the views of all biomedical citizen scientists. Additionally, the views of individuals that declined to participate or were not invited to participate may differ from those of interviewees; they might endorse or reject additional terms or have different preferences. Third, the majority of participants in our sample were based in the United States. Biomedical citizen scientists in other countries may hold different views about terminology stemming from unique cultural understandings of specific terms and regulatory environments. For example, in some European countries, the biomedical citizen science movement is subject to regulations that restrict genetic engineering activities to licensed facilities (Guerrini, Spencer, and Zettler 2018). Despite these limitations, our data provide insight into preferred terminology among a diverse group of biomedical citizen scientists.

The question remains whether consensus on terminology would benefit biomedical citizen scientists. While some in the broader citizen science community support standardization of terms and definitions (Heigl et al. 2019), others worry that standardization could “confine rather than define the field” (Auerbach et al. 2019, 15336). Our results, which provide new empirical data about the way biomedical citizen scientists describe themselves, indicate that at this stage, standardization of terms may be premature—at least for this subfield of citizen science. Nevertheless, as biomedical citizen science continues to evolve, an understanding of how different terms are used and perceived by its practitioners can help track that evolution and identify practices and policies that are consistent with their values and goals.

Authors’ contributions

MT participated in data collection, analysis and drafting the manuscript. CG designed the parent study. MT and CG conceptualized the subanalysis for this manuscript. MT, IC, and CG participated in data collection and coding. MT completed data analysis with feedback from IC, JO, and CG. MT wrote the first draft of the manuscript which was revised by IC, JO, and CG. All authors provided substantial revisions and feedback to the manuscript and have read and approved the final version.

Ethical approval

The study protocol was approved by the IRB at Baylor College of Medicine (H-40925).

Acknowledgments

The authors wish to thank the interview participants and Whitney Bash-Brooks for research assistance.

Conflicts of interest

The authors report no conflicts of interest.

Additional information

Funding

Development of this manuscript was funded by National Human Genome Research Institute grant K01-HG009355.