Towards Collectively-Defined Ethics Standards for Independent Researchers and Community Biology Groups

By Alex Pearlman, MA and David Sun Kong, PhD

MIT Media Laboratory Community Biotechnology Initiative

THIS IS AN UNEDITED DRAFT, PASTED AS SUBMITTED IN EARLY 2021. THE PAPER IS UNDER REVIEW.

Abstract

For the last 15 years, an emergent movement of “do-it-yourself biology” has aimed to reshape the institutionalized scientific enterprise. Now, practitioners have formed collectives, community laboratories, and collaborate with each other, reframing what was once a mostly solitary endeavor into what we term “Community Bio.” But while the majority of these independent labs and smaller Community Bio groups maintain strict safety protocols and local certification regulations, most have not yet developed research norms, or ethics standards that participants are held accountable to. In this paper, we detail the development and facilitation of a series of engagement exercises, the Ethics Workshop, with participants at the Global Community Bio Summit 3.0 conference, which resulted in a collectively-defined set of ethics standards. The resulting Community Ethics Document 1.0 is one of a growing number of foundational artifacts seeded by the Community Bio movement, which has, through the Global Community Bio Summit series of conferences, articulated the movement’s values, vision, and mission. We believe the framework we developed and describe in this paper can be applied across Citizen Science contexts and by any group searching to develop ethics guidelines appropriate to their circumstance.

Keywords: Community Bio, DIYbio, biohacking, citizen science, ethics, applied ethics

Introduction

In 2009, a group of synthetic biology enthusiasts met at the Asgard pub in Cambridge, MA, to discuss “Do-It-Yourself,” or “DIY,” biology. DIY Bio, the practice of engaging in independent synthetic biology research, genetic engineering, or biomedical and sensory augmentation, emerged in the US and Europe around 2008. (Meyer and Vergnaud, 2020) In 2009, Hackteria, an online wiki for “bioart, open source software/hardware, DIY biology, art/science collaborations and electronic experimentation” was launched. Community labs, such as New York’s Genspace, opened around the same time, to allow “the general public to pursue individual and group [biotechnology] projects.” (Genspace.org/mission) More labs followed, holding physical space for curious lay biologists to share their projects and ask questions. The DIYbio.org [1] email message boards (Meyer and Vergnaud, 2020), allowed anyone around the world, even those without access to a community lab, to engage with biology.

In 2011, DIYbio.org, then a non-profit organization, convened a congress to gather stakeholder input on responsible research standards. This gathering was, to our knowledge, the first attempt to convene the global network of emerging independent, community biology labs, which featured participants from throughout the US and Europe. The result was the US and European Codes of Ethics (diybio.org/codes/), which aimed to generate “an aspirational code of ethics for the emerging do-it-yourself biology movement.” In June 2012, the FBI hosted “DIYbio Outreach Workshops” in Walnut Creek and Sunnyvale, CA (Charisius et al, 2013 and Wolinsky, 2016), which enabled the early practitioners of the DIY Bio community to meet in person, some for the first time. In the ensuing years, as the community grew and more labs were established, regional gatherings were held occasionally, but were usually convened by agencies or institutions curious about what “amateur biologists” might be working on, as opposed to creating a venue for the community to organize itself.

The DIY Bio movement is connected to a lineage of activist movements in the computer and life sciences motivated by the idea that technology, be it software, hardware, or any form of institutionalized technology research and development must be accessible through a commons of knowledge. (Delfanti, 2012 and Sullivan, 2011) DIYbio is related to, but ultimately divergent from, similar movements focused on the democratization of knowledge, radical transparency, and the “rejection of institutional constraints” (Delfanti, 2010). These include computer hackers who agitated for an open internet, the Open Source movement, the Maker movement, and the rise of the Citizen Science and Open Science movements that emerged in the 1990s and early 2000s. Shortly after DIYbio gained a foothold, “biohacking,” in the form of independent biomedical research and sensory augmentation, soon became a significant sister movement to DIYbio (Meyer and Vergnaud, 2020; Wired Staff, 2006; Kolodziejczyk, 2017).

These groups — DIYbio and biohacking — intersected and inspired each other, and online networks began to take shape on forums (such as the legendary diybio.org listserv, and biohack.me, a virtual watering hole for biohackers), via regional community spaces, and on social media. (Landrain et al, 2013) Practitioners sought advice from their peers, collaborated, and shared tips with newcomers. By 2015, the DIY Bio community, once the domain of independent kitchens, garages, sheds, and local community labs, had evolved into a global movement of collaborative researchers.

We call this evolutionary movement “Community Bio,” and we will define the characteristics and history of Community Bio in the next section, as well as describe the collaborative processes that leverage movement-building tactics to make explicit the implicit values of the movement. Community Bio, as an emerging scientific field, is strengthened by predecessor movements, and builds upon them, combining the creation of engineered biological toolkits for use in environments that are decidedly non-traditional with a commitment to equitable access to scientific knowledge. Simply, we believe that DIY Bio is no longer a do-it-yourself enterprise. The majority of so-called DIY Bio practitioners, have formed cooperative-style shared spaces, often collaborate with each other, and publicly discuss and self-publish work on social networks or email groups, seeking advice, input, and partnership from within a decentralized, global community.

In addition to pursuing the advancement of accessible scientific research, Community Bio practitioners have injected decidedly activist strategies in order to build a social movement to advance open science and formalize and augment existing networks. The movement seeks to harness the power of collective organizing and prioritizes the galvanization of diverse groups based in and around community labs and public maker spaces, incorporating a strong focus on outreach, education, science communication, public health, and social and environmental justice.

The Global Community Bio Summit (GCBS), now in its fourth year, is the annual meeting for stakeholders in the evolution of the Community Bio movement. At GCBS, Community Bio practitioners share updates on research, network, collaboratively develop open science practices, and strategize ways to lead and grow the movement. The Community Bio ecosystem, including those who attend the GCBS, do not represent one kind of research or any one kind of organization. Some well-established community labs in large cities (such as Paris, the San Francisco Bay area, and New York) are over a decade old, have dozens or hundreds of individuals affiliated with them, and have even spun out start-up companies. Others are smaller, newer, and lack the resources of their larger counterparts. Others still are maintained by only one or two individuals, often found in rural areas and developing countries.

As varied as the Community Bio experience is, ethics oversight is equally divergent. Some labs, like Oakland’s BioCurious and the Baltimore Under Ground Science Space (BUGSS), have well-established rules and committees that approve projects. However, the majority of community labs, despite maintaining strict safety and security protocols (Pauwels et al, 2018), have not yet developed research norms, or ethics rules that participants are held accountable to. Traditionally, research ethics is approached through institutional or governmental infrastructure. But as independent scientific research in non-establishment settings grows, how should those researchers approach their ethical obligations? Given the uniqueness of the Community Bio movement, how might practitioners’ ethical obligations to each other differ from traditional research norms?

This paper presents a case study of a workshop held at the third annual Global Community Bio Summit that used a novel approach to investigate and define collectively held ethical principles in the Community Bio ecosystem through a series of engagement sessions: the Ethics Workshop.

The Ethics Workshop was successful in three key ways: participants identified, defined, and described research ethics norms that can be applicable in any Community Bio context; the workshop itself can be adapted and replicated by any and all Community Bio groups, individuals, or labs working outside oversight systems that are inherent to establishment research; and it continued to build upon previous artifacts that together are foundational works for the nascent Community Bio movement.

Background

In September 2017, the newly formed Community Biotechnology Initiative of the MIT Media Lab (led by DSK) organized the first “Global Community Bio Summit (GCBS) at MIT.” With approximately 200 participants from around the world, it was, to our knowledge, the largest gathering that had been convened featuring the greatest geographic diversity of participants from independent community biology labs. Attendees also included policy-makers, academics, and industry members who subscribed to the overall vision of a decentralized, accessible, Open Science. (Walker, 2019) Attendees at the first GCBS found that the threads connecting independent researchers in multiple countries were based on a shared interest in biology, and also represented a social movement that champions shared knowledge, interdisciplinary work, and distributive justice. GCBS was organized strategically, with speakers framing for the participants what a movement entailed: its characteristics, its meaning, its opportunities, and its challenges. GCBS was intentionally structured to enable community organizing amongst its participants to enable movement-style coordination, energy, and enthusiasm. Dr. George Church of Harvard University hailed the historic nature of gathering, declaring that “September 2017 may be remembered as a historic turning point” for the movement.

The Global Community Bio Summit: Evolving the Movement

By 2017, community laboratories around the world had become a force of collaborative but independent nodes, advocating for public access to scientific research and scholarship through community-based education of synthetic biology and the life sciences (Saraga, 2016). The group gathered for the first GCBS set about defining whether the community had evolved from being a do-it-yourself hobby to a distinct faction of science activists undertaking innovative, collaborative research — with the purpose of creating a new field of open science.

The GCBS brings movement-building tactics together with principles of collective intelligence (Malone and Bernstein, 2015) to empower and organize independent researchers, bringing social justice into the sciences in a revolutionary way. GCBS programming includes talks, panels, and interactive sessions which are supplemented by participant-led break-out sessions, workshops, and Un-conference talks, which often focus on education, outreach, and sustainability. Participants at the GCBS are widely interdisciplinary, and have varying levels of expertise and formal training. Many members of Community Bio hold advanced degrees in the life sciences, though the movement also includes scientists with skill sets along a wide spectrum of experience and formalized training — from academic and industry professionals, to amateurs, hobbyists, and novices.

Attendees at the first GCBS, in 2017, asked and answered the question, “Are we a movement?” (The answer was a resounding “Yes.”) At the second GCBS, in 2018, hundreds of participants worked together to collectively write a brief “Statement of Shared Purpose,” articulating and making explicit the values and mission of the community in a living document. [2] In 2019, over 400 participants from 40 countries focused for three days on collectively defining the Community Bio Movement’s ethics and norms.

Ethics in the Movement, via GCBS

Interest in redefining ethics for Community Bio started early in the history of the movement, and the work to create the Ethics Workshop detailed in this paper was inspired by discussions and programming at previous GCBS events. At GCBS 2.0, in 2018, two participant-led activities illustrated the community’s commitment to ethics, and a willingness to learn more about how to identify ethical standards and put them into practice. The “Community Bio Needs Wall” (a wall covered in blank poster paper) asked community members what they were most looking for from their peers, and the “Ethics Wall Exercise’’ asked participants to give their opinions on ethical issues facing the community. Attendees exhibited a wide swath of ethical concerns, expressed interest in creating ethics resources and tools for practitioners to use and share, and have stated that they feel ethics training is needed. On the Community Bio Needs Wall, one post read, “More in depth and nuanced conversations about bioethics and biopolitics” and “Contacts to lawmakers.”

Very few participants at GCBS have formal training in ethics. Despite this, creating ethics standards has been discussed on panels at all GCBS events. There is a strong interest in developing standards within the community, but a lack of understanding of how to create functional, useful ethics tools. Traditional research ethics standards do not always apply to researchers engaged in Community Bio, which can be unique in scope and participants, posing new, unprecedented ethical questions. Community Bio also exists in parallel to the triumvirate of traditional research realms: academia, government, and industry, which have oversight systems that are not accessible to community labs. The uneven access to oversight between establishment science and Community Bio has been referred to as “the ethics gap.” (Rasmussen, 2016)

The only existing Codes of Ethics for the DIYBio community were developed in 2011 and referenced earlier in this paper (DIYbio.org, 2011). They pre-date technological advances in synthetic biology and genome editing, such as CRISPR, as well as the recent growth of Community Bio as a global movement. As such, while still valuable, the 2011 Codes of Ethics are no longer representative of the community as a whole — some participants at the GCBS admitted to being too young to even know about them. Also concerning are members of the community, some of whom prefer the term “biohacker,” who have begun to veer into ethically questionable practices with implanted cybernetics and DIY gene therapy projects [3] (Pearlman, 2017 and Pearlman, 2020, Guerrini et al, 2019). Meanwhile, other community groups are developing projects that will rely on using human subjects in future research (Burningham, 2019 and Gallegos et al, 2018). Some practitioners are also invested in research on human health (Strickland, 2016 and Talbot, 2020) and environmental interventions (Hope, 2016), but there are no existing ethics oversight mechanisms available to the larger movement — a critical component for those researchers who hope to secure funding, publish in journals, or get approval from regulators to market consumer products. In the case of private ethics review boards, the fee for application for consideration is often much higher than a community lab project can afford, starting around $5,000, often with a la carte fees. Projects collaborating across borders raise additional ethical questions, and where responsibility lies in the case of an adverse event.

Further, the few instances of bad actors participating in risky behavior (Mullin, 2018) have perpetuated a negative media narrative around at-home self-administration of gene therapy, a practice confined to the biohacking community (Pearlman, 2016), but which may have ramifications for the global movement. Community Bio practitioners believe these behaviors make buy-in from regulators and support from the public challenging. Practitioners are anxious to work organizationally to prove that these incidents do not reflect the ethos of the larger movement.

Calls for a centralized licensing apparatus that would give independent biologists an official safety and ethics designation is a popular refrain from academics within the scientific establishment (Baumgaertner, 2018), but has been received with lukewarm feelings by the community, as there is little appetite to establish a centralized body. Meanwhile, there has been broad consensus around the idea of self-regulation by autonomous, decentralized labs. (Pauwels et al, 2018).

However, to accomplish this self-regulation, the community must define the ethical standards it will hold itself accountable to. There is an emphasis on autonomy within the community, which can be compared to a fleet of pirate ships (Trejo et al, forthcoming 2021), in that while pirates are not governed by a central regulatory apparatus, they traditionally shared common values and adhere to what was called “a pirate code,” as well as creating bespoke codes of conduct for individual ships. Community Bio practitioners may operate in a distributed, decentralized way, but they have demonstrated that they see themselves as part of a movement with shared purpose, values, and ethics. And despite a strong commitment to safety and concern about ethical questions, Community Bio is not interested in creating a shadow system that mirrors existing traditional oversight mechanisms. Instead, the movement hopes to reimagine these systems entirely, and create new, agile, oversight mechanisms that are optimized for the range of ways individuals and groups participate in Community Bio.

In the following sections (and the Supplement) we explain the methods used to facilitate discussion-based workshops at the 2019 GCBS 3.0, how these methods were developed in line with the character of previous events and the ethos of the Community Bio movement, an explanation of the collaboratively created Community Ethics Document, and finally, a discussion of potential future use of this work.

As the facilitator (AP) of the workshop and founder (DSK) of the GCBS, our hope is that the Ethics Workshop and the resulting Community Ethics Document will serve as a decision-making template for use by research groups in Community Bio movement and other open science, citizen science, DIY science, and biohacking spaces as a way to engage with research ethics, identify and contextualize challenging ethical questions about their work, and potentially develop community review boards. We hope that our colleagues use the Community Ethics Document as a decision-making guide to pursue ethical research across contexts.

As the Community Bio movement grows, there is support from within for reaffirming this commitment to ethics, and communicating to new members, the public, governments, and establishment science that practitioners understand their ethical responsibility to fellow researchers, research subjects, their own communities, and society (Trejo et al, under review 2020), much of which is discussed in the next section.

Figure 1: Diagram showing the process undertaken from the facilitated Workshop to the output Ethics Document. Step A: The facilitated workshop had three parts (see Figures 2–5). Step B: Data collected from the Workshop was entered into a color-coded, shared Google spreadsheet. Step C: After the last Workshop, an ad-hoc working group reviewed and synthesized the data, collectively created the Ethics Document, presented on the final day of the conference.

Three collective intelligence strategies were combined as a way to engage participants with bioethical issues facing their community in a creative and accessible way, regardless of participants’ level of experience with ethics. The Ethics Workshop framework combines organizing tactics created by Marshall Ganz (which inspired the “Almost/Never” exercise) and Thomas Malone’s Supermind Design (which inspired the large-small-large pattern of group work focused on storytelling). Then, to fit the casual atmosphere, the Workshop was rooted in principles of Design Thinking, which uses simple but effective brainstorming techniques: Post-its organized through open deliberation. We combined features of these three strategies (described in the Supplement to this paper) to develop the discussion-based Ethics Workshop.

Methodology of Creating the Ethics Workshop

The methods used to create and facilitate the Ethics Workshop at the 2019 GCBS were developed in line with the character of previous events and the ethos of the Community Bio movement. There was a conscious effort not to apply conventional qualitative research methods when working amidst this community, which sometimes actively rejects existing academic research norms. Instead, a purposefully unconventional approach was taken, and to create and facilitate the Ethics Workshop, inspiration was drawn from three leadership development methods used in various ways at previous GCBS events (see Supplement).

As a fully participatory event, GCBS workshops, exercises, and breakout sessions immersive experiences. In addition, most of the conference programming is focused on leadership development within the Community Bio movement. With this in mind, the Ethics Workshop was designed to compliment other heavily interactive sessions. Through group deliberation facilitated with tools grounded in the methodology of activist organizing, participants in the Ethics Workshop collectively created an innovative solution for self-defining norms for independent research. Here we sketch the framework of the facilitated engagement exercise, as well as explain the review and synthesis of data generated in the sessions. Finally, we describe the output of the sessions, the Community Ethics Document 1.0, and how an ad hoc working group formed to collectively write it.

Facilitated Engagement Sessions

The Ethics Workshop was a cornerstone of GCBS programming. There were opportunities for attendees to participate on both Days 1 and 2, although the workshop was scheduled against other talks. On the morning of Day 3, the Ethics Workshop was the only program running and all attendees were asked to participate. The sessions were informal, entirely voluntary, and participants were welcome to join or leave at any time. The Ethics Workshop was intended to elicit common ethical principles from Community Bio practitioners and each of the four sessions — one “test run” with event organizers via Zoom ahead of the in-person meeting and three sessions at the GCBS — was structured exactly the same.

The hour-long Ethics Workshop had three discussion-based parts, each incorporating group work. The facilitator did not participate, and instead answered clarifying questions, distributed supplies (Post-it notes and pens), encouraged discussion using prompts and examples, and kept time. The three-part structure of the Ethics Workshop is described below and detailed in Figure 2.

Figure 2: Each part of the workshop runs for approx. 15–20 minutes. Small groups are given Post-it notes and pens. The Facilitator kept time, answered questions, and prompted discussion.

Part 1: What (15–20 minutes)

In a loose appropriation of “Supermind Design” (Malone, 2018), participants were asked to form small groups of no more than seven people. Using Post-it notes and pens provided, each person was asked to write down one ethical principle they consider important to themselves or to the Community Bio movement. In turn, each person then illustrates their choice by sharing a personal story or experience with the group. Then, groups report back on the ethical principles their members chose. Example: One group reports their ethical principles as respect for animals, autonomy, accessibility, and open science.

During this reporting period, the facilitator, using a method associated with Design Thinking, asked for input on grouping thematically related Post-its together. Post-its grouped together either represented the same ethical principle, were very similar or were closely related. Ie, “respect for animals” “empathy” and “respectful cooperation” were grouped near each other during one session.

Figure 3: Examples of ethical principles mentioned during Part 1 of the Ethics Workshop. (L-R) “Avoiding capture: Maintaining a commitment to open science, being clear about value differences (not just commonalities), not creating a volunteer labor base ripe for appropriation.” (Day 1) “Active Inclusion: The lab should reach out to those who don’t have the opportunity to engage science.” (Day 2) “Humility: Always listen. Never assume you are the teacher.” (Day 2)

Part 2: How (15–20 minutes)

The small groups reconvened to collectively choose one of the ethical principles that had been identified in Part 1. Using the Ganz method of collaborative norm-setting, group members were then asked to write down two actions that would keep them, or the community, accountable to putting the group’s chosen ethical principle into practice: An “Always Do” action and a “Never Do” action.

Example: to practice Transparency, group members say Community Bio participants should…

Always Do: Share successes and failures openly, ask for help and input, accept constructive criticism and apply it

Never Do: Lie about sources of funding, fail to disclose conflicts of interest

The Always/Never Post-its were placed on the white board, grouped together with the ethical principles they corresponded to.

Figure 4: Caption: Examples of practices corresponding to ethical principles in Part 2. (L-R) “Inclusion: Always be aware of who is in the room. Never pretend there’s no difference” (Day 1). “Individual Credit” “Credit: Always give credit where credit is due. Never scoop, steal, appropriate ideas” “Not assume people want credits to be removed // Always ask how they want credited.” (Day 2). “Open Source, Not Open Access: Always, please do open science. Never, please don’t do proprietary science” (Group 5, Day 3)

Part 3: Discussion (remaining time)

The group engaged in reflection and open brainstorming, using Design Thinking to organize outputs of the discussion. The facilitator encouraged participants to “Step Up/Step Back,” a catchphrase used at the GBCS meant to inspire those who regularly interject opinions to allow others to speak. The facilitator asked if any important ethical principles for the Community Bio movement were missing from the board, if there were ethical principles or practices that anyone strongly disagreed with, and what ideas emerged, if any, about accountability or enforcement of the ethical norms of the community. The reflection period was a spirited and friendly conversation. There were no major disagreements or negative incidents.

Figure 5: Related ethical principles and Always/Never practices were arranged together during the large group discussions (Left). An image of the workshop in action during the Global Community Bio Summit (Right)

Review and Synthesis

Recording Data: After each session, the facilitator (AP) recorded responses from the groups into a Google spreadsheet accessible to all Bio Summit organizers, with an individual tab for each workshop session. Each ethical principle mentioned during Part 1 was assigned a color and became its own domain. For example, data from Day 1 generated a domain for the ethical principle Credit, on Day 2 data generated a domain for Humility. Each Always/Never practice was also recorded and was listed under each corresponding principle on the spreadsheets. The spreadsheet was shared with GCBS organizers and anyone with the link could view and comment. [Appendix A]

Creating the Community Ethics Document 1.0: During the review and synthesis process following the final workshop, between 8 and 10 people, all of whom had participated in the engagement exercises, created an ad-hoc volunteer working group which collectively analyzed and edited the spreadsheet data into what ultimately became the Community Ethics Document 1.0. [Figure 6 and Appendix A] The document intentionally included direct quotes from participant data, in line with the goal of creating a truly collectively defined set of norms. The group worked for approximately five hours to edit together ideas, quotes, concepts and the ethical domains discussed during the workshops.

The Community Ethics Document functions in two ways: First, it identifies and highlights ethical principles shared across Community Bio (such as Respect, Education, Open Science, Credit, and so on). Second, each principle is paired with a series of questions meant to inspire introspection and thoughtful practice by community members — whatever their context might be. Notably, the group decided against calling the document a “Code of Ethics,” which many felt was too restrictive and, because of a lack of oversight or enforcement apparatus governing the Community Bio movement, some thought a Code would be impossible to enforce and therefore would make it irrelevant.

By using the Document to steer discussion internally, community labs, groups, and individuals can utilize the principles listed in a way that is appropriate for their own situation. Groups can define how the principles apply to their individual needs, and use their own answers to the questions as a way to self-regulate in the absence of a centralized governance structure.

Figure 6: The Community Ethics Document 1.0

For example, the principle of “Open Science” was widely cited as an ethical principle that many within the movement prioritize in their work. Instead of offering a definition for “Open Science,” the document asks, “How do we encourage replicability and collaboratively share our results?” The questions define the principles and simultaneously put the onus for interpretation, self-regulation, and responsible science on the practitioners within the Community Bio movement in a way that reflects the values of the community. The document is also purposefully vague, so as to be applicable to almost any context; whether the user is a community lab with three members in a developing country or a start-up with venture funding based in a large American city. The Ethics Document was presented by the working group to the full group of attendees at the closing of the conference.

Key Findings and Discussion

The Ethics Workshop resulted in the first co-created ethics document for participants attending the Global Community Bio Summit event, and the first ethics document created by practitioners in the global Community Bio movement since the 2011 DIYBio Code of Ethics. The Ethics Workshop was not an attempt to ascertain universal ethics. It was instead an effort to identify the most salient terms for ethics standards, so that regardless of context, Community Bio practitioners (and other groups) would be able to identify and define research ethics norms for themselves and their labs. In this way, we can frame the Ethics Workshop within traditional engagement literature (Kearsley and Shneiderman, 1998). Participants in the exercises held at GCBS are stakeholder experts, and based on their knowledge and lived experiences, our efforts developing the Ethics Workshop and the facilitation of the sessions assisted in the development of guiding principles for the community.

The Ethics Workshop had three major outcomes, the most significant of which was the Community Ethics Document 1.0, a collaboratively created artifact meant to act as an ethical decision-making guide for community labs, small groups, or independent researchers who seek ethics guidance regardless of context or situation.

Another outcome of the Ethics Workshop is key in the evolution of the ethics of the Community Bio movement. Through the Ethics Workshop, participants identified a new ethical principle that had previously not been linked with the Community Bio movement: “Credit,” which was understood to be analogous to concepts found in establishment research such as attribution, or sourcing. “Credit” as an ethical principle which was not found in the review of global research ethics, and was not included in our map of ethical domains distilled from a landscape analysis [Appendix B]. However, it was mentioned during all three GCBS Workshop sessions. Within establishment research, intellectual property is governed not only by the law, but also within the norms of responsible practices. This ties into the concept of responsible authorship, when citing others’ research or using work created by others in one’s own research. Researchers, traditionally, are ethically bound to give credit where it is due. However, historically, within the Open Science movement of the past two decades, which largely operates under the same confines as the earlier Open Source movement (Tiemann, 2006), anyone is able to use and/or adapt work without necessarily being ethically obligated to pay fees or attribute the source or creator. That is, under most Open Source or Open Science licenses, a user may be able to legally use and build upon work without saying where it came from (OpenSource.org). Now, for the first time, the participants of the Community Bio movement have plainly said that they wish to retain credit and attribution for their work. While still subscribing to the tenets of accessibility that the Open Science movement was founded on, participants in the Ethics Workshop expressed that attribution is necessary for research to be ethical within the Community Bio movement. There were a number of reasons given for this during the Workshops, but one repeated concern was that intellectual property, products, or methods that are developed within the open, collaborative Community Bio ecosystem could be “scooped” by corporate interests without acknowledgment, and in direct opposition to the ethos of accessibility.

A third and final outcome was the recognition that many of the ethical principles identified by the community at the DIYBio congresses in 2011 (DIYBio Codes of Ethics) ( i.e. transparency, responsibility, and education), were still relevant within the community nearly a decade later, despite advances in technology and the exponential growth of the movement.

One noteworthy insight gleaned through the preliminary landscape analysis was that compliance with local and state regulators was often listed as a principle within research ethics codes, in regards to oversight of human subjects research, as well as regulations governing synthetic biology (Appendix B). The question of whether regulatory compliance can be considered an ethical norm within the Community Bio ecosystem was raised a number of times during the Workshops. Participants in the Ethics Workshop and the ad-hoc review working group could not agree on including regulatory compliance on the Community Ethics Document. Within the community, there is no consensus on whether Community Bio practitioners should comply with local law enforcement and regulatory infrastructures that govern research. To some, especially in countries with a history of mismanagement of the research enterprise, the suggestion that ethical research might, in some part, rely on regulatory compliance could be offensive. Additionally, for community members who are actively engaged in decolonization work and activism, who consider themselves or their work performative, artistic, or design-focused, whose work is considered illegal in one place and not in another, and especially who are collaborating with colleagues in two or more countries, it is difficult to suggest that non-establishment independent biology can only be ethical if compliant with local regulations. The working group felt strongly that to meet the goal of creating a document that was useful across contexts, principles related to the law and law enforcement should be left aside.

Limitations and Suggestions for Future Use

During the research and landscape analysis phase of this project, there was an attempt to include literature and sources that were representative of established norms in bioethics, and also broadly representative of community groups that prioritize decolonization and social justice, main themes within the GCBS event and the Community Bio Movement. However, it was a challenge to apply broad principles of social justice to research ethics, which are related but ultimately divergent fields. We did not include enough examples of codes of research ethics from nontraditional Asian and African research organizations and intend to apply more diverse, non-Western sources in a comprehensive mapping of global norms in research ethics and other forms of emerging ethical principles that are relevant to Community Bio practitioners, such as the Principles of Permaculture (Holmgren, 2015).

There are some concerns for the future applicability of the Community Ethics Document within the wider community. One is that a reporting or data collection mechanism is yet to be identified. Aside from one known instance of the document used to collectively define ethical principles within a community lab space (The president of BioCurious self-reported on social media as having used the document in the weeks following GCBS 3.0) (Chavez, 2019), there has been no follow-up with conference participants to ask whether, or how, the document has been applied in their home labs, nor has a survey been developed for the community to report back to organizers whether they found the Community Ethics Document to be helpful, or to collect meaningful critique.

An additional limitation of this research is that while useful, the Community Ethics Document cannot be considered to be wholly representative of the global Community Bio movement or entire DIYbio ecosystem, for the simple reason that the only people involved in creating it were those who were physically in attendance at the GCBS 3.0. While this is a valid critique of the exercise, we can say that the Community Ethics Document is somewhat representative of the larger movement because each participant in the workshops, as well as at the conference in general, represents themselves, and in many cases they are the leaders and founders of their home labs.

In the annual “Pluses And Deltas” document, a post-conference survey that participants are asked to fill out and submit to GCBS organizers, attendees submitted generally positive feedback on the Ethics Workshop and the process to create the document. Although there were no “deltas” or negative feedback points specifically related to the Workshop reported in the document, it is impossible to say whether there were any negative opinions about the work.

Additionally, we were pleased with the outcome of the Ethics Workshop because the exercise allowed active community members to interrogate their own relationships with research ethics, some of whom have had no formal training in ethics and have never considered their responsibility as scientists to uphold ethical practices. We heard repeatedly, even from trained synthetic biologists with advanced degrees, that they were never required to take courses in ethics. This is perhaps an avenue for institutional ethicists looking to apply the Ethics Workshop framework within their organizations.

A major limitation of the Community Ethics Document and the Ethics Workshop is a lack of enforcement within the movement. Without a central association or governance board that is responsible for some level of accountability, it is difficult to measure, track, or sanction unethical research within the Community Bio movement. However, it is not clear what kind of body or research governance group would be best equipped to manage oversight from within the movement, as many existing structures for ethics oversight within traditional science have been rejected by Community Bio practitioners as not being agile enough, being too entrenched in institutional politics, and in some case being corrupt. (Trejo et al, under review) Governance within the community continues to be a source of spirited debate.

Community Bio practitioners are, in general, interested in creating some level of governance or self-regulatory oversight, at least in a casual way that is in line with the ethos of the movement (Trejo et al, under review), and this is a natural next step for using the Community Ethics Document. One breakout session at the GCBS 3.0 focused on the potential creation of a “Biohacker IRB” or review committee, made up of Community Bio practitioners and experts. Unlike a traditional institutional review board (IRB), which is tethered to the established norms of government, academic, or industry research, which meets in person, and which can be prohibitively expensive for community labs, a Community Bio review committee could act in a peer-to-peer advisory capacity, as opposed to being an oversight board that approves or denies projects. This was also the conclusion reached by a group convened by the Wilson Center. (Pauwels et al, 2018) It is our belief that a Community Bio review board based on the norms defined by and for the Community Bio movement may be a welcome development to assuage concerns from regulators and the general public.

Looking ahead, the Community Ethics Document is the beginning of consistent and genuine engagement with ethics by participants within the Community Bio movement, as well as organizers of the GCBS. The document itself was created to be used as a tool for groups to assess their own research ethics obligations and responsibilities, and the document is intended to be used as a guide for pursuing ethical research. We hope to create a digital toolkit based on the Workshop so that in addition to using the document, groups have the option to replicate the exercise detailed in this paper to define their own norms and create sister documents.

Conclusion

The evolution of the ethics and norms of the Community Bio movement is a subject ripe for research. The participants in the movement are deft and deliberate researchers who are serious about a new, more inclusive, global society that engages with the life sciences and synthetic biology in creative ways. The Global Community Bio Summit is just one of many avenues available to the movement, but is the largest and easiest way for leaders within Community Bio to come together in person to collaborate.

The GCBS is a unique experience of collaboration and engagement between leaders in a flourishing community. The Ethics Workshops were an opportunity for this community to define a “new normal” for ethics in independent biology, and continue toward self-regulation in line with the movement’s ethos. Technology, like the Community Bio movement, is evolving incredibly quickly, and moves rapidly across borders by prioritization of open science, education, and inclusivity. Traditional research norms are often not applicable for this community, and by using this framework, practitioners can define for themselves what their ethics are.

We look forward to a future where science is collaborative, diverse, and sustainable. Community Bio is a building a new, democratized field that values the needs of people over profits, places significance on and incorporates the lived experience of groups traditionally excluded from participation in science, fights to make knowledge accessible, and forges an atmosphere of interconnectivity, commonality, and respect that will fundamentally transform biotechnology for the better.

Ethics and Consent: The study protocol was reviewed and determined to meet the criteria for exempt status by COUHES, the Institutional Review Board of the Massachusetts Institute of Technology (Exempt Id: E- 2625).

Funding Information: The Global Community Bio Summit 3.0 in 2019 was supported by MIT Media Lab, Ginkgo Bioworks, Millipore Sigma, Opentrons, and the John W. Henry Family Foundation.

Competing Interests: The authors have no competing interests to declare.

Data availability: All data from this project will be made available to the public on the Global Community Bio Summit website.

Acknowledgements

Thank you to the organizers and participants in the Global Community Bio Summit 3.0 who collaborated to enable the creation of the Community Ethics Document 1.0. Special gratitude to Marshall Ganz, Thomas Malone, Abel Cano, Ryan Hooper, Amanda Plimpton, Ryan O’Shea, Nick Titus, Todd Kuiken, Dan Grushkin, Sam Weiss-Evans, Andy Murray, Kristin Ho, Maria Chavez, Alison Stringer, Yong-Bee Lim, Aida Manduley, Dan Santos, Camilia Acosta-Lopez, Arunav Konwar, Desiree Dudley, Justice Walker, Nels Shafer, Sarah Ware, and the many others who organized GCBS programming, and who participated in the Ethics Workshops and collective writing session. Special thank you to Lisa Rasmussen and Chrisi Guerrini for their excellent advice and supportive mentorship.

Endnotes

[1] The DIYbio.org message boards are an email listserv hosted through Google Groups. The global mailing list is active on a weekly basis, even over a decade after it was launched, and discussions range from advice on projects to debates about new regulations.

[2] The Statement of Shared Purpose Version 3.0 reads:

“Our shared purpose is to fundamentally transform life sciences & democratize biotechnology to inspire creativity and improve lives by organizing life science change-makers and bioenthusiasts to build an inclusive global network, cultivate an accessible commons of knowledge and resources, launch community labs and projects, and enable local educators.”

[3] Since biohackers began experimenting with cybernetic implants and gene therapies, there has existed a messy ethical space in the tension between genuine self-experimentation and performative self-injections. This kind of biohacking, which could be seen as bordering on human subjects research, is concerning for some within the Community Bio movement due to the lack of an ethics framework or defined norms. Ethics standards are seen as a way to protect members and labs who produce uncontroversial research as well as a way to mitigate reputational harm to the movement.

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