Biohacking COVID-19: Sharing Is Not Always Caring

Abstract

This netnographic study investigates how and why people engage with citizen science initiatives and share insights from them in the context of the COVID-19 pandemic. Specifically, this research focuses on biohacking, a form of citizen science in which individuals conduct innovative but controversial self-experiments. In a context of ideological, behavioral, and emotional tensions, biohackers seek to do what they consider to be “the right thing” for themselves and others. Some biohackers believed that governmental “solutions” for the pandemic were not “correct” or “the best” and shared scientifically unproven protocols to develop, for example, homemade vaccines. However, in many cases, biohackers may unintentionally create harm while intending to do good by sharing such “solutions.” In this vein, this research shows that sharing is not always caring, as biohacking related to COVID-19 exemplifies. Although sharing is a form of prosocial behavior, it has different motivations that may invert its epistemic prosocial orientation to an antisocial one. This orientation results in new challenges, as well as strengthening old challenges, for policy makers facing public crises, such as pandemics. The prescriptions for policy makers offered in this article aim to help reduce such an impact on governmental efforts to tackle collective crises.

Human history is full of challenging situations in which we, as citizens, are placed in delicate positions in which we are obliged “to do the right thing” and to make tough but ultimately beneficial choices. For example, in the 1950s, American virologist Dr. Jonas Salk worked toward a vaccine against the virus that causes polio, a terrible disease also known as poliomyelitis or infantile paralysis (Oshinsky 2005). Salk's approach to solving the polio crisis ignored traditional scientific protocols; he used controversial experiments that involved giving injections to himself and his family. After years of challenging prevailing scientific orthodoxy, on March 26, 1953, Salk announced himself a hero on a national radio show and declared his success in developing a vaccine against polio. For some, he was irresponsible and criminal. However, by breaking the rules, Salk prevented death or paralysis for thousands of children.

Scholars have devoted considerable attention to investigating prosocial behaviors, which have been described as a broad range of actions intended to benefit one or more people other than oneself (e.g., Batson 2022; Pfattheicher, Nielsen, and Thielmann 2022; Septianto, Seo, and Paramita 2021). The complex nature of prosociality as a social phenomenon means that it can take the form of behaviors such as helping (Price, Feick, and Audrey 1995), comforting (Turley and O’Donohoe 2012), sharing (Baker and Baker 2016), cooperating (Ozanne and Ozanne 2021), celebrating (Brick et al. 2023), exchanging (Blau 1964), and accessing (Bardhi and Eckhardt 2012). Key among marketing studies is Belk's theory on sharing (Belk 2007, 2010, 2014a, 2014b, 2016), which broadly refers to the “act and process of distributing what is ours to others for their use and/or the act or process of receiving or taking something from others for our use” (Belk 2007, p. 127). For all its significant contributions, most research to date seems to presume the adage “sharing is caring” and to suggest that altruism is the primary motivation prompting such behavior. However, contrary to the overwhelmingly positive association in the literature between sharing and altruism, Batson (2019) argues that a one-to-one correspondence between prosocial actions and altruism does not exist when it comes to the motivation for sharing. In ideal terms, sharing may be an inclusionary act of caring, but in practice, it is often an exclusionary act of selfishness (Belk 2016; Ozanne and Ruvio 2016). Thus, despite being a form of prosocial behavior, sharing has a fringe side, with a pro-ego component that leads to unintended consequences such as excluding others. The notion that sharing is more nuanced than researchers have assumed and that it does not necessarily equate to an act of caring for others is central to our article.

The COVID-19 pandemic provides a unique context for investigating different motives for acting prosocially and sharing, especially when considering the social phenomenon of biohacking, or do-it-yourself biology (DIY biology). Biohacking is a type of citizen science, which is noninstitutionalized scientific research conducted by nonprofessional scientists (Irwin 1995). Biohacking enthusiasts, or biohackers, work on a broad range of biotechnological self-experiments, or hacks, to increase human well-being (Vaage 2017). In the case of the pandemic and the pursuit of solutions for tackling it, biohackers share advice based on bold but potentially dangerous DIY experiments. They purchase ingredients on the internet (e.g., intravenous [IV] supplementation kits), follow biohacking protocols to mix materials and methods (e.g., combining an IV with taking vitamin D), test their hacks while hoping for the best, and then share the results on social media. Biohacking is a manifestation of the institutional tensions among diverging scientific communities regarding the conditions of producing knowledge to serve society's needs. To an extent, biohacking can be compared to Salk's self-experiments with the poliomyelitis vaccine, whose declared purpose was to increase others’ well-being.

An issue arising from unpredictable, spontaneously precipitated, deviant, and occasionally illegal procedures (Delfanti 2013) is that these behaviors may unintentionally create harm though they arise out of care. In the pandemic's context of panic-driven governmental and political actions, general uncertainty, and low health literacy, some biohacking ideas may gain popularity and contribute to the current “infodemic,” the plethora of false or misleading information shared online about the pandemic (Mende, Vallen, and Berry 2021). The increased spread of fake news, fake facts, and conspiracy theories about COVID-19 may have led people to distrust traditional scientific institutions and resist governmental efforts. People's compliance with public policies and certain prosocial behaviors are conducive to solving public crises (Guerrini et al. 2018; Scott et al. 2020). Thus, we ask: How and why do people engage with citizen science initiatives and share insights from them?

We conducted a netnographic study (Kozinets 2020) on social media by following hashtags and discussions about biohacking related to COVID-19. Relying on abductive reasoning (Timmermans and Tavory 2022), we contribute, first, to the sharing theory (Belk 2007, 2010, 2014a, 2014b, 2016) by theorizing about possible motivations to act prosocially. We do so by showing that the pursuit of biohacking ideas and their consequent sharing can be altruistic, collectivist, and principlist, but an egoistic element may transform sharing into another prosocial or antisocial behavior. This insight is of high relevance because citizen scientists, like biohackers, may play a relevant role in shaping policy making throughout the entire policy process to solve the public crisis. Second, we recommend that policy makers create a public sector innovation (PSI) lab (Blomkamp 2022; Cole 2022; McGann, Blomkamp, and Lewis 2018), a multidisciplinary team focused on designing public policies collaboratively with biohackers. To expand on our ideas, the next section presents an overview of the literature about biohacking as a rebellious manifestation of citizen science, followed by a look at sharing theory. Then, we introduce the research context, data collection, and analysis procedures. Finally, we present our discussion, recommendations for policy makers, and conclusions.

Theoretical Background

Citizen Science and Rebellious Biohacking

Citizen science is a form of scientific research conducted by members of the general public who may or may not collaborate with scientific institutions (Irwin 1995). Notwithstanding its nonprofessional status, it aims at furthering humanity's well-being through scientific endeavors. That is, it is simultaneously science for the people and science by the people (Strasser et al. 2019). Despite its conflictual history, citizen science has achieved legitimacy through continued funding from the National Science Foundation since the early 1990s (Bonney 2016). From one point of view, then, citizen science is consistent with traditional science because of the professionalization of those involved and the following of prevalent scientific methods. In contrast, for some, citizen science's dependence on amateurs without formal credentials makes it antithetical to and a threat to scientific institutions. More than simply a participatory style of research, citizen science is a locus of power. It is sustained by ongoing ideological discourses and by emotional and behavioral tensions that shape disagreements about how, where, and why scientific knowledge should be produced (Strasser et al. 2019).

Some radical citizen scientists consider citizen science projects as serving a capitalist agenda rather than truly serving people's needs, owing to the scientific establishment's lack of recognition accorded to citizen scientists. In response to this charge, Wolff and Muñoz (2021) advocate for a model of “political participation” in which citizen scientists should be recognized as equal experts in producing knowledge and aiding decision making rather than as external contributors who simply collect data for formal authorities. This is similar to the significant impact that political participation now has on the policy-making process, but in a citizen science context. Schade et al. (2021) argue that citizen science has educational benefits, as it promotes scientific literacy, individual learning, and the development of scientific skills. Through active citizen participation, there is an increased sense of ownership of research results, which can influence the entire policy decision-making process, from preparation to implementation to evaluation (Chapman and Hodges 2017).

Here, a relevant example is the AIDS Coalition to Unleash Power (ACT UP), formed in the 1980s (Mahr and Strasser 2021). The coalition actively defined research and federal drug approval agendas, developed clinical protocols, and assessed outcomes. As citizen scientists, these patients and their relatives had a distinctive advantage in contributing experiential knowledge that professional researchers might have overlooked. Consequently, the U.S. government expedited its drug approval process, enabling quicker availability of potentially life-sustaining medications. Another exemplary policy-related outcome of ACT UP was the approval of the needle exchange program. After being influenced by visits to babies of HIV-positive mothers in U.S. hospitals and by the lobbying of needle exchange program supporters, New Haven's mayor, John Daniels, revaluated his initial resistance and approved the initiative (Keefe, Lane, and Swarts 2006).

One extreme manifestation of the tensions between citizen scientists and scientific institutions is biohacking. Since the 1980s, early biohacking movements, also called “noninstitutional biology,” were crowdfunded and had the support of the famous Counter Culture Labs, a microbiology makerspace that promoted biohackers’ ideas. Biohackers have an ethos rooted in rebellious hacker culture (Delfanti 2013); they question the proprietary structure of scientific information and urge ultimate freedom when it comes to sharing knowledge and material resources. This stance can be seen in the many cases of biohackers’ resistance to private (e.g., YouTube) and governmental (e.g., Food and Drug Administration) regulatory efforts (Zettler 2022). For biohackers, there is a commitment to promote open science as it goes against freedom of thought to prohibit individuals from engaging in scientific practices. To somehow “fight the system,” biohackers produce creative workarounds that oppose the high and well-defended thresholds for producing and sharing information characteristic of capitalist systems (Yetisen 2018).

Biohackers and others interested in DIY biology are a part of the same ecosystem (Vaage 2017) and have at least three common characteristics that are relevant to the policy-making process (Guerrini et al. 2018): (1) they bring biotechnology to the greater public and increase society's welfare; (2) they use research methods for purposes other than formal science, and research is performed by people without the same formal training as professional scientists, which makes them suspect and subject to greater ethical scrutiny; and (3) they tackle various issues related to biotechnology, from patenting rights to the proper applications of hacks. Further, biohacking as a social practice is broad; it can range from simple DIY self-experiments like consuming caffeine for a cognitive boost to extreme practices like developing chemical compounds to produce human night vision (Lima, Grubits de Paula Pessôa, and Belk 2022). Although biohacking may involve self-experiments to benefit oneself, it has a prosocial and collective dimension for the practice of sharing information and material resources. Some projects are crowdsourced and driven by the idea of “do-it-with-others,” an ethos aimed at hacking objects mainly for biomedical purposes. “Do-it-with-others” biohacking comprises the redesigning of technical equipment to make biology accessible; an example is the use of OpenPCR, an open-source machine to sequence DNA, instead of a conventional polymerase chain reaction device.

Sharing as a Form of Prosocial Behavior

Possibly, many societies would not exist as we know them without prosocial behavior. Individuals donate their time and possessions to charitable organizations (Nardini et al. 2022), give to their friends and family (Rapert, Thyroff, and Grace 2021), join forces with policy makers to solve systemic vulnerabilities (Bublitz et al. 2021), share information to alleviate structural tensions and strengthen group cohesion (Brouard et al. 2022), and so forth. In line with such pervasiveness, extant work on prosociality often defines it as a desirable and positive social behavior toward another individual (Pfattheicher, Nielsen, and Thielmann 2022). However, an issue emerging from this overly selfless outlining is the confusion about the close relationship between prosociality and altruism. While altruism aims to increase others’ welfare, prosocial behaviors reflect a broader category of welfare-promoting actions (Batson 2019). Such a fuzzy connection results in an overwhelming amount of work neglecting nuances of prosociality with its intended and unintended consequences (Batson 2022).

In marketing and consumer research, such a complex connection appears noticeably in studies drawing on Belk's (2010) work on sharing as a form of prosocial behavior. In its original conceptualization, sharing is defined as a socially inclusive, selfless, communal behavior reflecting altruistic motivations to benefit others with no expectations of reciprocity (Belk 2007, 2010, 2014a, 2014b). Past work thus seems to theorize sharing mostly as an act of agapic love, a taken-for-granted and well-regarded prosocial behavior (e.g., Dholakia, Jung, and Chowdhry 2018). Recently, however, scholars have questioned the adequacy of existing theorizations for their narrowed view of sharing as an altruistic prosocial phenomenon (e.g., Albinsson, Wolf, and Kopf 2010; Appau, Ozanne, and Klein 2015; Ozanne and Ruvio 2016). The same questioning is an ongoing discussion in other fields, such as psychology and philosophy (e.g., Pfattheicher, Nielsen, and Thielmann 2022), and has been largely influenced by Batson, Ahmad, and Stocks’s (2011) typology of motivations for prosocial behavior. As they propose, prosocial behavior is motivated by altruism, egoism, principlism, and collectivism.

Here, in the case of principlism, sharing may be a way to uphold major moral principles, such as justice (Batson, Ahmad, and Stocks 2011). As an example, Ozanne and Ozanne's (2011) work shows that sharing of toys at public toy libraries may be motivated by a sense of fairness and may help parents raise their children as moral citizens. As for collectivism, communal identity and a sense of duty toward a certain community may also motivate sharing (Batson, Ahmad, and Stocks 2011). Baker and Baker's (2016) study is an exemplary case. They highlight the meaningful role of shared material resources in reshaping a community's collective identity during recovery from a disaster. The last motivation proposed by Batson, Ahmad, and Stocks (2011) is egoism. As they propose, actions may have a prosocial orientation but are simultaneously egoistically motivated because of the use of others for self-benefits. This is what Belk (2016) theorizes as selfish sharing. As an example, consider the case of injectable drug users, as in some of Bathje et al.’s (2020) interviews; these users mentioned knowing about the dangers of sharing syringes but still did so in order to avoid being isolated from their community of users. Although egoistic sharing may not necessarily intend to harm others, it is hardly inclusionary.

To further contemporary discussions on the topic (e.g., Batson 2022; Brick et al. 2023), rather than considering egoism as an “independent” motivation, we posit that a pro-ego component exists in each of Batson, Ahmad, and Stocks’s (2011) motivations for acting prosocially, or sharing in this case. To develop our proposition, Andreoni's (1989, 1990) concept of impure altruism is a relevant starting point. For Andreoni, other people, ideas, and social causes serve as proxies for the actualization of self-benefits. This then suggests that altruism, principlism, and collectivism have an egoistic component though they are profoundly rooted in prosocial logic. In essence, such an “impure,” pro-ego component is a case of “helping me by helping you.” Here, the result of acting prosocially is a myriad of emotions including joy, happiness, excitement, satisfaction, and so forth. This emotional reward for “doing good” is referred to as having a “warm glow” (Andreoni 1990). As Pfattheicher, Nielsen, and Thielmann (2022) explain, individual and collective emotions are meaningful components of prosocial behaviors, be they to increase the welfare of others or the self (Batson 2010).

In this vein, by combining the sharing theory (Belk 2007, 2010, 2014a, 2014b, 2016) and motivations for acting prosocially (Batson, Ahmad, and Stocks 2011) with Andreoni's (1989, 1990) notion of impure altruism, we find answers to our research question. That is, we believe that such a combination is crucial to provide insights about how and why people engage with citizen science initiatives and share insights from them.

Research Context: Navigating the COVID-19 Pandemic

As of May 2023, over six million people worldwide had died after contracting COVID-19 (Our World in Data 2023). Despite the genetic complexity of the coronavirus and its unique potential for mutations, the challenges faced in the COVID-19 pandemic go beyond its biological dimensions. Shortages of oxygen in many health care units have led people to die of suffocation, already-overwhelmed health professionals have faced harassment, and rich countries are implementing booster shots, despite the unequal distribution of vaccines to poor countries. These are just a few examples of the social aspects of COVID-19 and offer additional reasons for curbing the disease as quickly as possible. Instead of working with the World Health Organization (WHO) and the scientific community to pursue this aim, some policy makers adopted controversial measures, such as avoiding lockdowns purportedly for economic reasons.

Indeed, the pandemic has a political dimension that has perhaps been much more influential in the decision-making processes of policy makers and in shaping public beliefs than has the health care system (Mahr and Strasser 2021). In many cases, people follow instructions and take actions based on personal beliefs and political affiliations rather than science (Mende, Vallen, and Berry 2021). Such responses then foster tensions between scientific communities and the public because of differing ideological discourses, emotions, and behaviors evidenced on a daily basis. With the global rise of the extreme right, those with divergent opinions can be segregated through new forms of organization and new tools (e.g., social media). These avenues for ideological isolation can nurture messages from social movements that may be antigovernment, antipolitical, or antiregulation, similar to biohacker sentiments. Consequently, the biohacking pursuit of an alternative health care solution has become somewhat entwined with fake facts, fake news, and conspiracy theories (Baumgaertner 2021).

Methods

We rigorously followed Kozinets’s (2020) netnographic guidelines and precisely adhered to his investigative data operations protocol. This protocol presupposes following informational traces created in communications among people, social media platforms, and other market actors (Kozinets 2020). Investigative data are not generated by the researcher but by others, generally unknown, and are selected for theoretical and contextual relevance to compose the data set. From December 2019, when the first tweets mentioning the virus emerged (e.g., https://twitter.com/kRiZcPEc/status/1212010091399921667), to April 2022, we monitored keyword combinations and hashtags (see Table 1), paying attention to narratives about the pandemic on Facebook, Twitter, and Instagram. The natural flow of messages led us to two specialized Google Groups: DIYbio and Humanity+ Members. On these platforms, conversations about practices for tackling the crisis other than those proposed by the World Health Organization (2021) were observed and purposively selected, following the principle of interdiscursivity or orders of discourse (Greimas 1987). That is, we focused on keywords and hashtags and considered the semantic linkages among different messages over time and across social media platforms. Netnographic sampling is generally purposive or theoretically driven rather than representative. This means that the number of interactions or utterances is less relevant to the analytical process (Kozinets 2020). Although most of our data are textual, additional data include our netnographic immersion journal, screenshots, photos, and videos downloaded from social media that serve as cultural material. The combination of multiple data types enabled a greater immersion in the sociocultural dimension of the pandemic and allowed a reflexivity process (Wallendorf and Belk 1989). Data collection and analysis stopped when theoretical saturation was reached (Denzin and Lincoln 2018).

Table 1.

Data Set.

Source	Example of Keywords and Hashtags	Total
Facebook	Biohacking; biohacker; hack; hacking; covid-19; covid; quarantine; DIYbio	1,650 posts with comments
Twitter	Biohacking AND covid; biohacking AND covid-19; hack AND covid; hacking AND coronavirus; Biohackers AND coronavirus; biohackers AND quarantine; #DIYbio; #biohacking; #covid	4,683 tweets
Instagram	#DIYbio; #biohacking; #hack; #covid; #biohacker; #quarantine; #self-isolation; #coronavirus; #covid-19	2,903 posts with comments
DIYbio	Vaccine; homemade; covid-19; covid; DIYbio; DIY; biohacking; alternative; immunization; CRISPR	222 messages
Humanity+ Members	Vaccine; homemade; covid-19; covid; DIYbio; DIY; biohacking; alternative; immunization; CRISPR	133 messages

Our ethical protocol strictly followed Kozinets’s (2020) recommendations. First, this study received approval from an Ethics Review Board from the first author's university at the time. Second, the lead author fully disclosed his identity as a researcher on all social media profiles and presented himself as such in the case of Google Groups. Third, we assigned pseudonyms to respect the anonymity of those involved with biohacking because it is a sensitive topic. Lastly, although the data presented in this study come from the public portion of social media and groups, we carefully paraphrased quotes to avoid the traceability of profiles. The final data set consists of 9,591 manually retrieved textual entries (see Table 1).

Regarding our coding, our abductive cycles followed Timmermans and Tavory's (2022) principles of constantly revisiting the phenomenon, defamiliarization, and alternative casing. In abiding by these principles, our study revealed findings that partly reinforced inferences and conjectures about biohacking while introducing new insights. To ensure trustworthiness (Wallendorf and Belk 1989), we sustained our arguments through (1) prolonged engagement within the field, as the first author established himself as a member of biohacking communities; (2) purposive sampling; and (3) reflexive journaling.

Findings

Motivations for acting—or sharing—can be seen as social acts, and not necessarily as a direct expression of some inner psychological state (Mills 1940). In different situations, people rely on specific words, expressions, and statements that are socially accepted to explain, justify, and make sense of their motivations and behaviors (Gilman 2021). On social media, accounts of what, how, and why to conduct biohacking to tackle COVID-19 can be understood as linguistic cues of biohackers’ motivations. In answering our research question on how and why people engage with citizen science initiatives and share insights from these initiatives, we identified two main themes. In the case of the first theme, “Hacking to Share,” biohackers try to “do the right thing” by conducting self-experiments and sharing resources and information about them. In the second theme, “Sharing to Hack,” biohackers share resources and information to create hacks for others.

These two main themes are split into six subthemes that are organized based on Batson, Ahmad, and Stocks’s (2011) typology of motivations for acting prosocially (i.e., sharing) combined with Andreoni's (1989, 1990) impure, egoistic element as a common characteristic. In this vein, the subtheme “altruism” includes accounts suggesting that a person hacks to benefit others out of care. Counterindications of such altruistic acts are categorized as “impure altruism” because of the depiction of others as a proxy for self-benefit, such as receiving payment. References to sharing hacks to support moral values, such as justice, are grouped as “principlism.” Suggestions of the reinforcement of personal moral values are grouped under the subtheme “impure principlism.” Accounts of hacks for the purpose of benefiting a group, which may enhance one's sense of belonging, are categorized as “collectivism.” Finally, within this collective perspective, accounts of people sharing biohacks to achieve social recognition and rewards are grouped as “impure collectivism.” We also point to the permeability of sharing with other behaviors, prosocial or not, which are further detailed as shown in Table 2. This is followed by several unintended consequences that belie the assumption that “sharing is caring,” especially in turbulent contexts.

Table 2.

Behaviors Coupled with Sharing.

Behaviors	Descriptions
Donating	Act of donating money, goods, blood, or organs that are given to help a person or organizations (e.g., Bradford and Boyd 2020)
Helping	Giving aid or support to another person (e.g., Dunfield 2014)
Gift-giving	The transference of ownership via giving a gift; reciprocal exchange is nonobligatory in appearance but obligatory in practice (e.g., Belk 2010)
Cooperating	Acting with another person to reach a common end or to achieve an effect jointly (e.g., Dunfield 2014)
Recruiting	The processes of identifying, attracting, interviewing, selecting, and hiring personnel for a business, social cause, or other purposes (e.g., Bardhi and Eckhardt 2015)
Resisting	An activity that interferes with changes of a social practice that is required by a social group (e.g., Albinsson, Wolf, and Kopf 2010)
Promoting	Marketing communication tool that communicates a sponsored message to promote or sell a product (e.g., Bardhi and Eckhardt 2015)
Selling	Interactions between actors with the goal of creating and maintaining value through the alignment of institutional arrangements and commercial relationships (e.g., Scaraboto 2015)

Hacking to Share

The “Hacking to Share” theme encompasses circumstances in which biohackers first try treatments, measure them, and only then share information about and material resources for the action they believe should be pursued (or not). In most instances, these cases are examples of individual “DIY” biohacking projects aimed at tackling the COVID-19 pandemic.

Altruism and impure altruism

In the case of sharing personal health care experiences on social media, Mahr and Strasser (2021) argue that such behavior indicates prosociality, which reflects the altruistic aspect of sharing (Belk 2010). Indications of the adage “sharing is caring” in biohackers’ posts can be seen in their avowed care and use of expressions such as “I just wanna help,” “glad to help,” and “love.” For example, Dom posted some hacks that were shared with his loved ones:

With the coronavirus at the top of everyone's mind, protecting yourself against it should be too. That's doing whatever it takes to support your immune system [and] natural processes. In my friendship group (colleagues, speakers, and close friends), it always is the priority. One of the best ways to strengthen your immune system is through sauna sessions. This [is] because of its ability to raise the body's temperature, like creating a false fever. Producing a false fever by raising your temperature helps because when your body spikes a fever, it stimulates immune function. Summary: Sauna helps kill viruses. Be healthier.

Dom's recommendations depart from experiences with his inner social circle of Instagram followers, who may not have the same emotional connections as his beloved people. Such sharing, as Belk (2010) proposes, seems to be for the sake of caring for others without necessarily creating intimate bonds. The tricky aspect, however, is that, despite scientific speculations about the therapeutic benefit of saunas against COVID-19 (Kunutsor and Laukkanen 2021), there is no official recommendation for saunas as a preventive measure. Rather than benefiting others through altruistic but fringe sharing, then, cases like Dom's may lead others to experience adverse consequences in trying to replicate the hack.

In the middle ground between altruism and egoism, people may have egoistic motivations for sharing, such as shame, pride, and even selfish concerns like getting paid for something, but may avow altruistic reasons for sharing (Andreoni 1989, 1990). Dash's Instagram post exemplifies a case of impure altruism deploying a manipulative discursive strategy:

I’ve just created a back-to-basics, fundamental guide to biohacking [and] health optimization … and in ordinary times, I’d be excited [and] overcome with joy at the thought of welcoming so many people into the biohacking world. But instead, I’m worried. Worried for so many people locked inside, the pressure makes them think they’re healthy at home or occasionally at a supermarket with a mask. When we need to take control and focus on our health, we’ve had that power taken away. Today, the fightback [sic] begins. I want to empower everyone who wants to be happier, healthier, and the BEST version of themselves. There's something extraordinary in the link to the bio. Visit: ***.com

Dash's post begins altruistically but concludes by asking readers to click on a link for a paid course based on her hacks. Despite the avowed care she expresses, the fact that she uses others as a means to an end challenges the conceptualization of sharing as a nonreciprocal, generous, and purely altruistic act (Belk 2007). In this “Hacking to Share” example, sharing becomes a gateway for selling (Scaraboto 2015). Moreover, Dash's negative mentions of masks, mandates, and lockdowns highlight the unhelpfully political aspect of the pandemic. This ideological volatility impacts policy makers’ efforts to secure consumers’ understanding of how and why they should comply with public norms (Stewart 2021).

Collectivism and impure collectivism

Baker and Baker (2016) show that individuals collaborate by sharing material and immaterial resources to overcome challenges and encourage recovery in collective catastrophes. As an example of such collectivism (Batson, Ahmad, and Stocks 2011), a group of biohackers created a DIY project to develop a homemade vaccine. As declared by Jeff on Facebook, they intended to help biohackers in doing the same for fellow biohackers, as well as biohacking enthusiasts wishing for an alternative solution to the pandemic:

I have been silent on my social media profiles for a few weeks because I have been working furiously on a new project. Science, in my opinion, is free. I get a lot of criticism because of that and the theatrics. But I want scientific discovery to be spectacular. I want it to be beautiful. My goal is to make you laugh, cry, and hate. This will be a story for the ages. I have read a scientific paper that inspired me to create a DIY Covid-19 vaccine project with my besties, Derek and Martha. We will test a Covid-19 DNA vaccine based on that paper. And this isn’t the wild part. We want to teach you how to create your own vaccine. We will give a free online course over the next months on YouTube. It’ll be exciting and tense, but I wanna share all of that because this is what science should be.

By using the words “laugh,” “cry,” “hate,” “wild,” “exciting,” and “tense,” for instance, Jeff portrays not only his emotional predisposition but also a connection between possible personal motivations for doing good through sharing and the desired collective outcomes of such sharing. In this case, sharing and helping, which are different types of prosocial behaviors, are intermingled because they may have the same motivation: to alleviate a negative state of stress (Dunfield 2014). In practice, while sharing happens through the distribution of resources, helping occurs by correcting unintended negative outcomes. However, the message's somewhat rebellious and defiant tone may have the unintended consequence of nurturing filter bubbles (algorithmically driven networks of agreeable content; Rhodes 2021).

With a similar sense-defying tone at the end, Mary's message on Instagram shows traces of impure collectivism:

BREAKING NEWS: We are now requiring Vitamin D Passports at my Canadian shop for COVID-19 reasons. When we have a stronger immune system and are healthier, we can protect all [those] around us. If your vitamin D levels are at least 60, like mine, all of you are welcome to enter and enjoy a gift card with a purchase of a biohacking service. Do you have yours already? We can all get biohacked together safely. Maybe the #canadiantruckers can help us with a protest against the government and make it official.

Although scientifically debated (Pereira et al. 2022), higher vitamin D levels may not protect people from the coronavirus. They will, however, allow those interested in Mary's biohacking business to receive some perks. Despite avowing a sense of “we-ness,” in this example of “Hacking to Share,” Mary's message disguises an egoistic motivation and is more about promoting her business than about sharing as an act of caring. Regarding the potential consequences of recommendations like Mary's, Greene and Murphy (2021, p. 781) argue that “even a single exposure to health misinformation may ‘nudge’ behavior,” leading people to self-harm.

Principlism and impure principlism

Grounded in the notion of freedom and an emphasis on open access to knowledge, biohackers sometimes share their hacks in support of moral principles. Timothy's post has some cues about principlism as a motivation for sharing (Batson, Ahmad, and Stocks 2011):

Can you imagine having one of these cards with your vitamin D levels, recent exercise and food intake details? The Federation of Censored Knowledge United (FCKU) is not real and records like these are unlikely to become mandatory. So it's up to you to learn about and consistently apply time-tested habits to naturally support your health. … I think everyone should have a choice regarding their health, including access to as many sources as possible to make an informed decision. “Choice” and “informed” are the underlying terms here. I’m not for or against vaccines; some have proven to help, and some haven’t, and apparently at least 51% of the USA's population does not want one. I will have it one day, but I will not be a “crash test dummy.” I’ll wait for the data and longitudinal studies that the medical system always claims [are] required to validate.

Timothy's morally loaded suggestion to rely on supplements, exercise, and nutrition as possible alternatives for vaccines is marked by expressions like “censored,” “mandatory,” “choice,” “decision,” and “crash test dummy.” Timothy's account points to the tensions between traditional scientific communities and citizen scientists, which enable biohacking to emerge as a social phenomenon (Delfanti 2013). In Timothy's case, acting prosocially by sharing becomes a way to resist the ideological structures of supposedly oppressive systems and institutions. Although his avowed motivation may be to do good by questioning the morality of some public health care guidelines, a complex issue in Timothy's post is its semantic association with conspiracy theories around COVID-19.

Such shared self-experiments, which are supposedly for the common good, are not without moral criticism from biohackers, as found in David's post on a Google Group:

Just because some famous biohackers are using it, sharing it, and fiercely saying that it is “the right thing to do,” like you’re doing here, doesn’t mean that this hack is morally okay and scientifically unquestionable. I agree with Thomas. Biohacking a virus like a coronavirus this way is one example of [how] anything that is potentially good is also potentially very dangerous. By injecting these chemicals into your body, you’re adding something to your immune system's blacklist. For example, the Pandemrix Influenza, the flu vaccine, gave permanent narcolepsy to some people because it targets a neuroreceptor very similar to the one you do in your hack. So, there is history showing that this approach is not good. The consequence was the patient's immune system wiping everything out. This hack can leave your and others’ immune systems eating away chunks of your brains.

Despite the hype about biohacking created by some news media in the COVID-19 pandemic context (Baumgaertner 2021), this message displays nonconformity, worry, and condemnation. As the last example of the “Hacking to Share” theme, David's post highlights the questionable moral notions underlying both hacking and sharing when seen as “the right thing to do.” His message critiques what seems to be impure principlism on the part of his fellow biohackers. This critique, in turn, leaves us to question: According to whom is biohacking the “right thing to do”?

Sharing to Hack

In the “Sharing to Hack” theme, the collective of biohackers shares information and supplies to work on new hacks to be first tested on other people and objects. This theme also involves cases of biohackers sharing their own bodies to be hacked in trials of homemade vaccines. The following examples can be framed as a “do-it-with-others” type of biohacking.

Altruism and impure altruism

In an example of altruism as an avowed motivation (Batson, Ahmad, and Stocks 2011), some biohackers share their knowledge and projects in the hope of helping others without necessarily considering the risk of unintended consequences. This seems to be the case with Brian. In a Google Group, he shared the process needed to create the RaDVaC, an intranasal vaccine:

I became fascinated with RaDVaC (https://radvac.org/vaccine/) as soon as I heard about it in July. I read the paper carefully, researched the references and decided to take it and produce this intranasal vaccine. I got so happy that I went further. I’ve now created a mobile lab that fits in a suitcase and have been traveling around with it to help people make their own vaccines. Once they understand the process, I leave all supplies with them for free and return to buy more. It's just a few hundred dollars for this small lab. It's brilliant.

Brian's fascination and avowed willingness to help others are materialized by his itinerant lab and his free distribution of supplies along the way. This altruistic account also shows that his prosocial act of sharing is enmeshed with some degree of personal sacrifice (e.g., financial, emotional, temporal), which is characteristic of donations (Bradford and Boyd 2020). Here, Brian shares information but donates tangible and intangible resources, blurring the epistemic boundary of different prosocial behaviors. Despite his generous act, however, there is no mention of the results, side effects, or peculiarities arising from his N-of-1 experiment.

The somewhat altruistically motivated development of alternative vaccines has continued alongside the emergence of new variants, as Alex mentioned on Twitter in early 2022: “RaDVaC team will release an open-source RNA vaccine candidate soon.” Despite ongoing institutional efforts to combat the pandemic, then, biohacking ideas are still bubbling away. We found more egoistic cases of “helping me by helping you” through sharing hacks such as Monna's tweets:

Monna: Is anyone on Twitter working on an open-source prophylactic solution using SARS-Coronavirus-2 counteracting monoclonal antibodies? I would love to participate.

QQ: I’m not an expert, but I’ve heard of it, but it seems to be unlikely because people I trust were not excited [about it]. A friend sent me [this message]: “I had completely forgotten about the homemade intranasal vaccine. It seems easy to do it, but no one has yet revealed the results of it.”

Monna: I have a selfish reason to see this solution coming to reality: I have no measurable immune response to all doses of Moderna's vaccine. Probably because of my immune suppression post-transplant. I am motivated by the RaDVaC project.

Dom: Monoclonals are kinda complicated, I wouldn’t be surprised at all if anyone is doing them in a sort of biohacker way.

Monna: One small thing I already know is that povidone-iodine swabbed up in your nose probably helps protect you from COVID. You can also gargle in your throat.

Despite skepticism from others in the thread, Monna's accounts illustrate impure altruism in her pursuit of an alternative solution. She even shares a “small thing” to supposedly “help” others. Although Mahr and Strasser (2021) note that sharing health care information on social media may be altruistic, messages like these may backfire and foster the infodemic (Mende, Vallen, and Berry 2021).

Collectivism and impure collectivism

As an example of collectivism (Batson, Ahmad, and Stocks 2011) in the “Sharing to Hack” theme, biohackers worldwide worked on the Coronavirus Tech Handbook, an open-source document containing shared knowledge and hacks for consumers, companies, experts, and policy makers, among others. On Twitter, several biohackers praised the relevance of this one-of-a-kind project:

DNT: Crowdsourced library of tools for tackling COVID-19. Let's put our minds together.

Jessy: This will be helpful for everyone: from presidents, policymakers, and residents to community leaders. I’m so impressed and relieved.

James: During #COVID-19 it's not easy to know how to be useful, especially as a programmer. Luckily, @n**, who ran the Handbook to help governments [and] citizens get engaged, has set up the Handbook. As part of that, I’m helping them.

Sharing, in this case, may be motivated by collectivism, but it seems to be considerably shaped by the outcomes of recruitment and participation. As James emphasizes, in the COVID-19 pandemic, it is hard to know how to contribute effectively toward solutions. This ambiguity reiterates Irwin's (2001) arguments advocating for citizen science initiatives such as biohacking when objective and appropriate institutional or governmental responses to public crises are lacking.

When it comes to institutionalized biohacking endeavors, sharing information to hack the virus is most effectively driven by hackathons, short-term events in which programmers and other technology enthusiasts create functioning hardware, software, and chemical solutions. In most cases, these events take the common good as their underlying moral principle, as in the example of the WHO's Regional Office for Africa, which hosted the continent's first COVID-19 virtual hackathon (see World Health Organization 2020). However, as the saying goes, “There is no such thing as a free lunch.” These gatherings can eventually become examples of impure collectivism through the emergence of business opportunities that suggest financial benefits for those involved rather than just communal generosity (Andreoni 1989, 1990; Batson, Ahmad, and Stocks 2011). An example of such impure collectivism is the Hack for Wuhan hackathon, sponsored by Run the World, a company in Silicon Valley:

Haaboli: Support uniting mission-driven innovators, Hack for Wuhan by Wuhan2020 connects developers, designers, and creators all over the world to use technology to come up with something to help fight COVID-19.

Zablon: Let us hack together against it. We are seeking novel designs, prototypes, and business or social impact projects. This effort will make a profound impact.

Kaiyuanshe: Join Hack for Wuhan to fight against coronavirus with us!!! Hack for Wuhan is a public welfare endeavor to contribute to anti-epidemic activities.

The apparent sense of belonging characteristic of communities is sustained by sharing information and material resources with peers “to do the right thing,” which, in this case, is to hack the coronavirus. Nevertheless, expressions like “support uniting mission-driven innovators” and “let us hack together,” which are semiotically connected to brands and companies, indicate proximity with economic exchanges rather than sharing (Belk 2010). Given the pandemic's ideological and political nature, a serious issue that may arise in some contexts is businesses turning to political lobbying to secure their agenda. In such cases, people may ignore governmental guidelines and adhere to guidelines proposed by companies or preferred brands. Sharing thus may turn into pseudo-sharing because of the association with marketing efforts (Belk 2014a).

Principlism and impure principlism

Biohacking as a righteous endeavor is fundamentally shaped by the major virtue of sharing to collectively gather knowledge through making (Lima, Grubits de Paula Pessôa, and Belk 2022). As an example of principlism in the “Sharing to Hack” theme, in a Google Group, Andreas and Brian discussed the ethical considerations to be taken into account before sharing and conducting biohacking:

Andreas: There are people already trying it, and even GC [George Church] snorted it (not that this necessarily means something, I know). Their solution only uses materials and methods that are already validated and have scientific acceptance. The main idea is to take synthesized peptides and after mixing them with chitosan, you snort the solution. To be honest, after reading some reports of unpredictable long-term organ damage because of coronavirus, their homemade vaccine doesn’t look so crazy anymore. In the worst case, you snort some chitosan that will decompose and peptides that will turn into amino acids.

Brian: Since 2011, we have been spending significant energy creating ethics codes for working with DIYbio. That year, people and representatives from regional groups of DIY biologists from Europe came to BIOS Centre to craft our code of ethics for our emerging movement. Your proposal is guerilla science, something that should only be used in “end of life” situations. Remember Steve Jobs and his experimental therapies for cancer.

Brian's message highlights the fuzzy limits between individual freedom and social dangers in sharing and developing DIY experiments that are too extreme. Yetisen (2018) argues that biohackers’ individual autonomy, accessibility, and voluntarism go hand in hand with collective dependence, inaccessibility, and social obligations. Behaving ethically, in this case, means sharing ideas and resources to collectively create hacks as long as they can be ethically justified.

However, the impure, or egoistic, element of principlism as an avowed motivation has been found in some messages regarding human challenge trials, a type of medical research in which volunteers share their bodies to be infected (or hacked) to accelerate the development of therapeutics (Zettler 2022). Alastair's post illustrates this element:

I got infected with COVID-19 as part of a trial and am donating the €5000 I received for participating. You get paid a lot for participating in these human trials. It's a good thing that volunteers receive [compensation] for being in trials, and it's a good thing that everyone got paid for being in this one too. However, some have said that this means that volunteers are financially motivated to take on risks that they otherwise wouldn’t.

Bradford and Boyd (2020) suggest that the sacrifice of the physical self (i.e., the body) may be essential in some contexts of prosocial behavior. However, by sharing one's body to be hacked by others, people may experience an egoistic “warm glow” (Andreoni 1990), as Kevin describes:

To @o**, who I have been working [with] for a while now, what you do, your work, a lot of which had been done before I ever even know of your existence, you’ve done astoundingly—it was the best form to participate in a health project I’ve ever filled out! To the volunteers I have never met: you did something remarkable, I sincerely hope you realize just how wonderful it is.

Like Kevin, many other biohackers and participants in COVID-19 human challenge trials were praised for their virtuous behavior, as in the following Twitter thread:

Marc: These are brave people. I salute them all. Seriously, do these altruistic people fit this selfish world?

CNN: Thousands of people want to be exposed to Covid-19 for science.

Dan: The difference between altruistic people like them is that they consider other people to be as worthy as their loved ones. Strangers are no less deserving of care.

Sinz54: They’re heroes for taking a huge risk. According to the site recruiting volunteers, the risk of death can be around 2%.

These messages have linguistic traces of morality, virtuousness, voluntarism, generosity, bravery, sympathy, and kindness. Nevertheless, volunteering to be hacked could be an egoistic means to an end for the sake of “getting my share” (Belk 2016, p. 37). Here, impure principlism may take the form of financial benefits or social appreciation (Andreoni 1990).

Discussion

This study examines how and why people engage with citizen science initiatives and share insights from them. To do so, we explore distinct nuances of prosocial behavior (i.e., sharing) in the COVID-19 pandemic. We demonstrate that, in a context of ideological, behavioral, and emotional tensions, biohackers seek to do what they believe is “the right thing” for themselves and others. There is the perception that governments did not offer the “correct or best solution” to the problem, as seen in Dash's and Timothy's posts. They do so by sharing information, material resources, and their bodies for biohacking. Nevertheless, such sharing is not necessarily an act of caring for others because it entails some impure or egoistic elements that are symptomatic of Andreoni's (1989, 1990) impure altruism. As the biohackers’ accounts reveal, it is true that in some cases, avowed motivations may indicate generosity (altruism), morality (principlism), and a sense of togetherness (collectivism). However, some of these accounts reveal self-benefits, such as financial rewards (impure altruism), the reinforcement of their sense of morality (impure principlism), and enhanced social appraisal (impure collectivism). These self-benefits, in turn, blur the epistemic boundaries of sharing as prosocial behavior, especially when unintended consequences, such as harming and not caring, occur. Figure 1, which is based on our findings but is also consistent with prior literature, illustrates our insights.

Figure 1.

Insights from the Context.

The result of this is the formation of new challenges or the strengthening of old challenges for policy makers in facing public crises, such as the COVID-19 pandemic. In this vein, the following section presents theoretical implications for the sharing theory (Belk 2007, 2010, 2014a, 2014b, 2016) and recommendations for policy makers.

Theoretical Contributions

This study makes two theoretical contributions to the sharing theory (Belk 2007, 2010, 2014a, 2014b, 2016). First, it issues a corrective to the assumed view of sharing as mostly an uncontested and unequivocally altruistic type of prosocial behavior. Indeed, prior work has identified different possible motivations for sharing (e.g., Albinsson, Wolf, and Kopf 2010; Baker and Baker 2016; Belk 2016; Ozanne and Ruvio 2016; Scaraboto 2015). However, so far, none of this work has theorized about a pro-ego component (e.g., impure altruism), blurring the epistemic boundaries between sharing and other prosocial and even antisocial behaviors. As our findings demonstrate, sharing occasionally occurs in tandem with another behavior constitutive of social relations, be it motivated by altruism, principlism, or collectivism and their impure variants. This coupling can, in turn, lead to various intended and unintended outcomes, such as caring and harming, respectively. On this issue, Belk (2010, p. 728) questions whether consumers truly differentiate sharing from gift-giving, helping, donating, borrowing, selling, and so on. Given the confusion in distinguishing these constructs and the discussions of the similarities between them, Table 2 shows a list of behaviors found in our data that were sometimes coupled with sharing. There is no sharp criterion for forming these couples, such as mandatory mutual exclusion. Instead, they are to be seen as part of a continuum of prosocial or antisocial behaviors. Furthermore, it should be borne in mind that other coupled behaviors can be identified in different sociocultural contexts.

Sharing is sometimes coupled with helping, for example, as seen in Dom's message on Instagram, while Brian's account comprises not only sharing but also donating. In another case, however, we can see Dash sharing information while simultaneously asking for subscriptions and payments, which is far from the conceptualization of sharing as a selfless act. Because sharing is “socially constructed, embedded in values, cultural norms, relations, and human emotions” (Price and Belk 2016, p. 193), a key element of understanding such coupling behaviors is recognizing the presence of different emotions. Here, Andreoni's (1990) concept of warm glow is useful to unfold this insight. Indeed, as acknowledged in the literature, many factors influence the pursuit of this emotional reward for “doing good” (Llamas and Thomsen 2016). It is safe to say, however, that over the course of the COVID-19 outbreak, many of us have experienced the loss of personal and collective notions about what emotion is “acceptable” to feel. Here, we may wonder: When does happiness become guilty? When is the warm glow transformed into “cold glow,” or feeling bad for supposedly “doing good”? The mixture of sadness, happiness, fear, love, care, hate, anger, and disgust energizing different ideologies and social practices has made the meanings of “behaving prosocially” unclear during the pandemic.

One extreme but clear example of this lack of clarity is found in pathological altruism. This form of altruism manifests in an attempt to promote the welfare of others at the cost of pernicious long-term consequences to the self (Oakley et al. 2012). The pandemic has accentuated such behaviors because of the different forms of vulnerability (e.g., emotional, social) that it has triggered. Pathological altruism becomes especially complicated when money or other forms of reward are involved (Oakley et al. 2012). As seen in the “Hacking to Share” theme, some biohackers may enter a circuit of dangerous social performances and consequently detrimental rewards. They do so by engaging in a sharing–promoting coupling that results in the antisocial outcome of harming, as opposed to the desired, prosocial caring outcome. In these cases, the more rebellious, bold, and potentially controversial the shared hacks are, the more likes, comments, and shares biohackers receive. Likewise, the more recognition, interactions, and followers biohackers receive, the more money and social appraisals arise from these hacks. Thus, warm glow may come at the expense of the biohacker's well-being.

This study's second theoretical contribution relates to individual or collective “acceptable” emotions energizing possible sharing couplings. To begin with, Belk (2010) argues that sharing outside the immediate social circle usually creates no intimate bonds. In contrast, we show that a sharing–cooperating coupling, for example, may lead the giver to experience a sense of belonging that could be emotionally charged. As seen in some biohackers’ accounts of volunteering in human challenge trials, the “we-ness” may relate to an imagined sense of “being part of the solution and not the problem.” Collectivism and principlism may forge such a feeling and nurture the aggregate extended self beyond intimate others (Belk 1988, 2010).

This insight is aligned with other recent findings on experiences of self-extension when sharing with people who are not kin, and its benign societal impacts (e.g., Llamas and Thomsen 2016). However, unlike Belk's (2010) sharing prototype in which emotional bonds are created through love and caring, some biohackers are united by disgust, rage, and skepticism. These emotions are found in the case of biohackers who teach others how to create homemade vaccines because of their lack of trust in traditional scientific institutions. In such contexts, we argue that the permeability of personal boundaries might be more related to the “acceptable” emotions and behaviors emerging from the sociocultural contexts than to a real desire for sharing with others outside the immediate family. That is, if I offer my homemade vaccine formula without any clinical trials or other proofs of efficacy, I may be knowingly or unknowingly seeking online likes, kudos, and positive comments more than actually seeking to benefit my followers. This desire to be a hero by sharing “the cure” may result in a premature rush for glory with or without careless or pernicious intent. Monetizing the sharing inclination is commonly criticized for exploiting the ethical high ground and warm feel of sharing (Bardhi and Eckhardt 2015), but the theoretical monkey wrench, in this case, is instead a desire to be a microcelebrity among biohackers.

Recommendations for Policy Makers

As our data show, citizen science projects involving biohacking have the potential to offer valuable insights that can inform various public policy decisions. In turbulent contexts of panic-driven governmental and political actions, such as the COVID-19 pandemic, it is essential to foster civil–government partnerships to benefit the community as a whole. In this vein, we recommend establishing a PSI lab, a permanent, multidisciplinary team focused on creating public policies using human-centric design-thinking techniques (Cole 2022; McGann, Blomkamp, and Lewis 2018). A PSI lab is likely to be adequate for ameliorating acrimonious relationships among biohackers, other citizen scientists, policy makers, and traditional scientists. The rationale for our recommendation is that a PSI lab prompts active participation from all stakeholders to foster society's well-being. In doing so, it tackles different societal problems (e.g., fake news, access to public services, endemics, environmental issues, and poverty) from a unique perspective (Tõnurist, Kattel, and Lember 2017). Because of the PSI lab's variety of methodological expertise that is not usually the purview of policy makers, it has the potential to generate highly innovative ideas (Blomkamp 2022). Following the global trend of using citizen science by governments and multilateral organizations to tackle societal challenges (Shanley et al. 2019), we thus advocate for policy makers to encourage people to engage in citizen science but within certain boundaries provided by PSI labs.

In this vein, like the Barcelona Urban Lab in Spain, the PSI lab should be a government-controlled unit to avoid serving interests other than those of citizens. Although such a lab can operate at different levels (e.g., state, national), we recommend a more local focus for three reasons: First, each level may have different policies, which makes collaboration across levels difficult. Second, it is easier to begin a small project, test it, and then scale it. Third, citizen science initiatives like biohacking do not usually rely on large laboratory infrastructure and big budgets. At this point, we acknowledge that citizen science initiatives emerge differently worldwide, and because of that, a PSI lab might be subjected to local legislation (Guerrini et al. 2018). However, our proposal focuses on two policy processes relevant to most citizen science projects and thus potential transference to different countries. Thus, the PSI lab should concentrate on (1) problem recognition and (2) proposal of solutions (Howlett, Ramesh, and Perl 2020).

The problem recognition stage begins with identifying key actors connecting policy makers and biohackers: the local maker communities. These communities comprise techno-enthusiasts who work on DIY creative projects building on open-source hardware to solve problems (Delfanti 2013). Many biohackers work at makerspaces and innovation labs and participate in makerspace hackathons. The makers community shares the biohackers’ bold approach to innovation, but the community works within normative frameworks. Many of these communities receive public funding, making them a strategic ally. Once partnerships are established, the PSI lab must rely on educational strategies that comprise, for instance, multidisciplinary forums focused on designing public policies collaboratively with biohackers. Because biohackers seek to do “the right thing” for themselves and others, invitations to form partnerships should rely on linguistic cues of principlism and collectivism (Batson, Ahmad, and Stocks 2011). Policy makers could establish joint sessions such as those held at the American Marketing Association’s annual Marketing and Public Policy Conference with the aim of mutual learning. On the biohackers’ side, their participation has the potential to create legitimacy for their practices, which could influence the policy process by working more closely together. This would be similar to the result achieved by ACT UP members who were appointed to pharmaceutical company advisory boards and government committees (Keefe, Lane, and Swarts 2006).

As seen in our data, it is relatively easy to purchase biohacking kits online, access “how-to-do-it” tutorials on YouTube, and follow online discussions on the chosen topic. This ease of access is apparent in the availability of direct-to-consumer genetic tests that consumers purchase to make health care decisions, despite their lack of genetic literacy for interpreting the results (Pearson and Liu-Thompkins 2012). In some cases of a sharing–helping type of coupling, biohackers use genetic tests from companies like 23andMe as blueprints to conceive, test, evaluate, and share hacks on social media. Such initiatives, however, may be followed by others replicating the self-experiment or consuming the homemade substance in question without considering the biological uniqueness of such experiments. Moreover, although online platforms tag some messages as misleading information, chances are high that the biohacking suggestions under discussion may nurture conspiracy theories and filter bubbles (Mende, Vallen, and Berry 2021). This complex scenario can be a focal topic for policy makers and medical authorities when sharing their ethical concerns and explaining the liability of biohacking. Such debates would constitute part of the empathizing process of the design-thinking method, in which the goal is to obtain insights into people's experiences with different problems (Brown 2019; Lewis, McGann, and Blomkamp 2020). In other words, the results of educational strategies must increase the PSI lab's knowledge about how biohackers see the world and validate (or not) assumptions about them.

The knowledge gathered from this stage would then inform the subsequent policy creation process, namely proposal of solutions. Here, the PSI lab must rely on engagement strategies premised on the cocreation of solutions. After defining problems (e.g., fake facts about hydroxychloroquine), the PSI lab team must promote iterative cycles of the design-thinking method's ideation process, pursuing innovative ways to solve issues (Brown 2019; Lewis, McGann, and Blomkamp 2020). Accordingly, “the options on what to do about a publicly recognized problem” (Howlett, Ramesh, and Perl 2020, p. 132) must take into consideration the fact that, first, biohacking is a manifestation of the tensions among diverging scientific communities about the conditions of producing knowledge. Second, however, biohacking, like other citizen science initiatives, also has a prosocial orientation, and biohackers have distinct motivations for different societal challenges.

In response to these factors, the PSI lab could, for example, replicate the WHO's Regional Office for Africa (World Health Organization 2020), relying on local maker communities’ social capital to create partnerships with biohackers and to promote hackathons in makerspaces. Doing so could enable pioneer creative solutions such as low-cost COVID-19 tests (Baumgaertner 2021) and develop collaborative guidelines for biohacking activities. As our findings show, many hacks framed as apparent sharing–cooperating couplings were initiated by a series of altruistic, benevolent acts. These acts were then recognized, celebrated, and followed by others. In an unsuccessful example of such collaborations, however, and despite the avowed collectivist motivation for its creation, the crowdsourced Coronavirus Tech Handbook may be a case in which such cooperation backfired. Crowdsourced initiatives like this one can unintentionally contribute to panic-driven governmental and political actions brought on by the pandemic and increase resistance against scientific institutions. In cases like this, the PSI lab's formal participation could help prevent unintended consequences arising from the intention to do good. Therefore, the proposed outcome of engagement strategies is a set of cocreated proposals based on scientific evidence and social accountability aligned with citizens’ needs.

Crucial to informing both educational and engagement strategies are the data that are collected and analyzed through the processes of tracking and understanding. In this sense, our suggestion is aligned with Guerrini et al.’s (2018) recommendations for outlining protocols for using data from citizen science projects in designing public policies. Figure 2 illustrates our proposition, highlighting iterative processes (dashed arrows) and subsequential connections.

Figure 2.

PSI Lab.

The PSI lab team must track keywords and hashtags to help identify trends and patterns from information shared over the internet. Tracking can be achieved through netnographic digital research methods (Kozinets 2020), as deployed in the current study. From the data collected, both quantitative and qualitative insights can be gained from shared (mis)information, such as Monna's suggestion for gargling povidone-iodine to supposedly avoid COVID-19. These insights would then facilitate the interlocution between policy makers and biohackers.

Given that the PSI lab could aid governments at levels other than the municipal level (Cole 2022; Kronsell and Mukhtar-Landgren 2018), these proposals have the potential to provide different stakeholders with a better understanding of what constitutes freedom of action and freedom of speech, of what motivates people to pursue risky alternatives to solving issues, and, potentially, how to anticipate similar crises. Additionally, the PSI lab's insights could inform government communication strategies, since well-defined messages from public institutions and their successful uptake are essential for controlling the pandemic (Stewart 2021).

Conclusion

Biohacking and other forms of self-experimentation, such as those carried out by Dr. Salk to produce the polio vaccine, are nothing new, but they are likely to remain fringe endeavors. However, there are no mentions of self-experiments either in the Declaration of Helsinki, which is a set of bioethical principles and rules for human experimentation proposed by the World Medical Association (1964), nor in the Nuremberg Code (1947), a set of research ethics established after the atrocities committed during World War II. Even the U.S. Food and Drug Administration faces challenges in clearly defining, following, evaluating, and regulating biohacking and self-experimentation (Yetisen 2018). Some biohacking initiatives, such as the one created by the biohacker Will Canine, can indeed be of genuine help to humanity. Together with other biohackers, they launched a Kickstarter campaign in 2020 to create an automated, low-cost robot platform, called OT-2, capable of bypassing elite labs and diagnosing COVID-19. In New York, for example, as a result of this innovation, diagnostic times shrank from two weeks to 12 hours, which undoubtedly contributed to saving lives (Baumgaertner 2021).

In such cases, policy makers and other public actors should recognize that an approach other than that proposed in this research could fail if it is top-down and paternalistic. They also should recognize that, like other citizen science initiatives, many biohacking projects seek to create innovative and fast solutions to tackle significant problems, such as the pandemic. Much like policy makers, some biohackers genuinely believe that their decisions and actions are “the right thing to do” for themselves and for others. Despite biohackers’ various motivations for sharing their bodies, ideas, and material resources, the resulting hacks may have a considerable societal impact, whether positive and intended or negative and unintended. We hope our research sparks greater interest in understanding the phenomenon of biohacking and inspires future studies that investigate the many aspects not examined here. Future research can explore, for example, the limits of individual freedom in consuming and conducting self-experiments, the role of governments in composing research ethics boards for biohacking projects, the ethical issues involved in selling biohacking products, and possible influences of health care literacy and socioeconomic contexts on the acceptance of biohacking in tackling societal challenges. Additionally, researchers can investigate specific challenges regarding policy domains that are pertinent to most citizen science projects, such as intellectual property, research integrity, participant protections, and the process of incorporating citizen science findings into practical policy decisions.

Editor

Kelly D. Martin

Associate Editor

Hope Jensen Schau