Community Engagement and CRISPR Gene Editing for Ecological Intervention in a Shared Ecosystem to Combat Lyme Disease on Martha’S Vineyard

Community Engagement and CRISPR Gene Editing for Ecological Intervention in a Shared Ecosystem to Combat Lyme Disease on Martha’s Vineyard

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Citation Thompson, Seth. 2020. Community Engagement and CRISPR Gene Editing for Ecological Intervention in a Shared Ecosystem to Combat Lyme Disease on Martha’s Vineyard. Master's thesis, Harvard Extension School.

Citable link https://nrs.harvard.edu/URN-3:HUL.INSTREPOS:37365008

Terms of Use This article was downloaded from Harvard University’s DASH repository, and is made available under the terms and conditions applicable to Other Posted Material, as set forth at http:// nrs.harvard.edu/urn-3:HUL.InstRepos:dash.current.terms-of- use#LAA Examining Responsive Science: Community Engagement and Ecoystem Engineering to

Prevent Lyme Disease on Martha’s Vineyard

Seth Thompson

A Thesis in the Field of Biology

for the Degree of Master of Liberal Arts in Extension Studies

Harvard University

March 2020

Abstract

Evaluative research on community engagement and the use of CRISPR genome editing for ecosystem engineering has been underappreciated and therefore lacking. This thesis fully describes and evaluates the innovative approach of “Responsive Science” from the community’s perspective. In this thesis I examine how this model of responsive science has affected the way the community views the research and the interactions with the researchers. Approaches for engaging the public when utilizing CRISPR-based genome editing for ecosystem engineering are currently being developed and so far, no gold- standard has been defined. An engagement process is as critical to the success of such projects as the science; and needs to be treated as such. My research focuses on the community engagement process of Responsive Science, evaluated from the community’s side: has the engagement process been responsive to the community and its needs? I will investigate whether claims by the researchers were fulfilled by the community and if the community felt their preferences were truly reflected in the MAT program.

Acknowledgments

First, I would like to thank Dr. Jeantine Lunshof, for her wisdom, advice, encouragement, and patience. I am forever grateful for her counsel and support; without it my thesis would not have been possible. I would like to thank Dr. Sheila Jasanoff for her expertise, suggestions and guidance. Thank you to Dr. James Morris, for connecting me with the aforementioned experts, positioning me for success and for keeping me on schedule.

Finally, thank you to Dr. Sam Weis Evans, Avery Normandin, Devora Najjar, and the other members of the Responsive Science team.

Table of Contents

Abstract ...... iv

Acknowledgments ...... v

List of Figures ...... vii

List of Graphs ...... viii

Chapter 1 Introduction ...... 1

Definition of Terms ...... 4

Chapter 2 ...... 7

Background ...... 7

Engagement Globally ...... 7

Definitions of Engagement ...... 11

Definitions of Community ...... 14

Engagement Concepts ...... 16

History of Community Engagement ...... 26

Chapter 3 ...... 32

Examining Responsive Science and Mice Against Ticks ...... 32

Responsive Science ...... 32

Mice Against Ticks ...... 36

Public Presentations & Slide Decks (Martha’s Vineyard) ...... 38

Greenwall Foundation Grant ...... 41

The Tick-Borne Disease Research Program (TBDRP) ...... 41

No Time for Lyme! ...... 42

Commentary and analysis of MAT Community Engagement ...... 46

Chapter 4 ...... 49

Materials, Methods, Limitations ...... 49

Interviews ...... 49

Participants ...... 52

Research Limitations ...... 54

Interview Questions ...... 55

Chapter 5 ...... 58

Examining Community’s View of Engagement ...... 58

Themes from interviews ...... 60

Grades ...... 61

Chapter 6 ...... 68

Conclusions ...... 68

Ways to Improve Community Engagement in MAT ...... 69

A Second Experiment in Direct Scientific Democracy ...... 70

References ...... 74

List of Figures

Figure 1: Definitions of Publics, Stakeholders, and Communities ...... 15

Figure 2: Categorizing public participation ...... 18

Figure 3: Public Participation Guide ...... 20

Figure 4: Public Participation and its Impact on the Decision ...... 21

Figure 5: Level of Engagement and its Relationship to Level of Decision Making ...... 23

Figure 6: Attributes of Public Engagement ...... 24

Figure 7: Public Engagement in Denmark Consensus Conference ...... 25

Figure 8: “No Time for Lyme!” Brochure ...... 43

Figure 9: Science of Stakeholder Engagement in Research ...... 45

Figure 10: Interviews for Research ...... 51

Figure 11: Interview Themes ...... 60

vii

List of Graphs

Graph 1: Understanding the Goals of Responsive Science ...... 61

Graph 2: Assessment of Community’s Expectations Post Responsive Science Engagement ...... 63

Graph 3: Understanding Participants Expectations for Responsive Science ...... 64

Graph 4: How Participants View the Interactions Between the Scientists Leading this Project and the Community ...... 65

Graph 5: MAT Team and Community Interaction ...... 66

viii

Chapter 1

Introduction

Illnesses from mosquito, tick, and flea bites have tripled in the United States, with more than 640,000 cases reported during the 13 years from 2004 through 2016. Nine new pathogens spread by mosquitoes and ticks were discovered or introduced into the United States during this time. Extensive and challenging to control, diseases from tick, mosquito, and flea bites are major causes of sickness and death worldwide. In 2016, the most common tickborne diseases in the U.S. were Lyme disease and ehrlichiosis/anaplasmosis.1 In the United States, over 300,000 people are diagnosed with Lyme Disease each year and nearly 20 percent of those infected develop long-term, serious medical complications.2 The other diseases identified in the CDC’s report were Zika virus, West Nile virus, malaria, yellow fever virus, Dengue viruses, Eastern equine encephalitis virus, chikungunya virus, California serogroup viruses, St. Louis encephalitis virus, tularemia, fever rickettsiosis, babesiosis, and plague.3

Lyme Disease in New England is widespread; Massachusetts is particularly impacted, designated by the CDC as one of the top 14 states with the highest rates of disease cases. On the island of Nantucket, Massachusetts, almost 40 percent of its inhabitants have suffered through

1 “Illnesses from Mosquito, Tick, and Flea Bites Increasing in the US | CDC Online Newsroom | CDC.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, May 2, 2018. https://www.cdc.gov/media/releases/2018/p0501-vs-vector-borne.html.

2 “Mice Against Ticks · Responsive Science.” Responsive Science. Accessed September 30, 2019. https://www.responsivescience.org/mice-against-ticks.

3 “Illnesses from Mosquito,” CDC Online, 2018.

1 the fevers, rashes and pain from Lyme Disease.4 A group of scientists and researchers at the

MIT Media Lab has an innovative approach that aims to interrupt the transmission of Borrelia

Burgdorferi—the bacterium that causes Lyme Disease, with the goal of reducing the incidence of tick-borne disease. Mice Against Ticks (MAT) is a project under the Responsive Science initiative created by the MIT Media Lab. MAT was established with the goal of significantly reducing the spread of Lyme Disease on the Massachusetts islands of Martha’s Vineyard and

Nantucket through the introduction of genetically engineered heritable immune mice. This means that it requires editing of the germline genome of the white-footed mice (Peromyscus leucopus) that are the main local reservoir for tick-borne pathogens.

In the last few years, the genome editing technique CRISPR has been chosen as the preferred method for genome editing due to its high degree of fidelity, relatively simple construction, rate of diffusion, and low cost.5 MAT will use CRISPR to genetically engineer mice that are immune to Lyme bacterium and tick saliva; the mice will then be released onto the island of Martha’s Vineyard to spread immunity through subsequent generations as the mutant mice breed with wild-type mice.

In a recent report, the United States National Academy of Sciences, Engineering, and

Medicine (NAS) notes that important questions raised with respect to genome editing include how to incorporate societal values into salient clinical and policy considerations. Public

4 Yong, E. “One Man's Plan to Make Sure Gene Editing Doesn't Go Haywire.” The Atlantic, July 11, 2017.

5 Rodriguez, Eduardo. “Ethical Issues in Genome Editing for Non-Human Organisms Using CRISPR/ Cas9 System.” Journal of Clinical Research & Bioethics08, no. 02 (2017). https://doi.org/10.4172/2155-9627.1000300.

2 participation should be assimilated into the policy-making process and should include ongoing monitoring of public attitudes, informational deficits, and emerging concerns about issues surrounding enhancement.6 Simply trying to educate the public about specific science-based issues is not working and moving beyond what too often has been seen as a paternalistic stance is imperative. Engaging the public in a more open and honest bidirectional dialogue about science and technology should be the goal of the scientific community. Research performing institutions increasingly say they have traded in their old, top-down models of science literacy and public understanding for public consultation and public engagement. The philosophy behind consultation and engagement seems, on closer inspection, not to have changed much at all.

Usually scientists expect consultation and engagement to cultivate a public more supportive of science as planned by, performed by, and promoted by scientists—despite the fact that neither consultation nor engagement have been rigorously evaluated to see if these goals are reasonable or even possible.7 This research will explore the MAT project team’s approach to engagement and examine an important question—How the scientist-community interaction about the proposed ecological intervention is perceived by the community members? In other words: what did the community expect from 'Responsive Science' and were those expectations met?

6 Gaskell, George, Imre Bard, Agnes Allansdottir, Rui Vieira Da Cunha, Peter Eduard, Juergen Hampel, Elisabeth Hildt, et al. “Public Views on Gene Editing and Its Uses.” Nature Biotechnology35, no. 11 (2017): 1021–23. https://doi.org/10.1038/nbt.3958.

7 Borchelt, Rick, and Kathy Hudson. “Engaging the Scientific Community with the Public.” Science Progress | Where science, technology, and progressive policy meet. Science Progress, April 21, 2008. https://scienceprogress.org/2008/04/engaging-the-scientific- community-with-the-public/.

Definition of Terms

Community: Groups of people who live near enough to a potential field trial or release site that they have a tangible and immediate interest in the project.

CE: Community Engagement. This encompasses the community engagement activities performed by the researchers.

CRISPR: Clustered Regularly Interspaced Short Palindromic Repeats.

CRISPR-Cas9: CRISPR-Cas9 was adapted from a naturally occurring genome editing system in bacteria. The bacteria capture snippets of DNA from invading viruses and use them to create

DNA segments known as CRISPR arrays. The CRISPR arrays allow the bacteria to "remember" the viruses (or closely related ones). If the viruses attack again, the bacteria produce RNA segments from the CRISPR arrays to target the viruses' DNA. The bacteria then use Cas9 or a similar enzyme to cut the DNA apart, which disables the virus.

The CRISPR-Cas9 system works similarly in the lab. Researchers create a small piece of RNA with a short "guide" sequence that attaches (binds) to a specific target sequence of DNA in a genome. The RNA also binds to the Cas9 enzyme. As in bacteria, the modified RNA is used to recognize the DNA sequence, and the Cas9 enzyme cuts the DNA at the targeted location.

Although Cas9 is the enzyme that is used most often, other enzymes (for example Cpf1) can also be used. Once the DNA is cut, researchers use the cell's own DNA repair machinery to add or

4 delete pieces of genetic material, or to make changes to the DNA by replacing an existing segment with a customized DNA sequence.8

ESSRG: Environmental Social Science Research Group. Research and development enterprise working on the boundaries of environmental and social sciences with a transdisciplinary approach.9

Genome editing: Genome editing, a type of genetic engineering (also called gene editing), is a group of technologies enabling scientists the ability to change an organism's DNA. These technologies allow genetic material to be added, removed, or altered at particular locations in the genome. Several approaches to genome editing have been developed. A recent one is known as

CRISPR-Cas9, which is short for clustered regularly interspaced short palindromic repeats and

CRISPR-associated protein 9. The CRISPR-Cas9 system has generated a lot of excitement in the scientific community because it is faster, cheaper, more accurate, and more efficient than other existing genome editing methods.10

Lyme Disease: Lyme disease is caused by the bacterium Borrelia burgdorferi and

8 “What Are Genome Editing and CRISPR-Cas9? - Genetics Home Reference - NIH.” U.S. National Library of Medicine. National Institutes of Health, April 25, 2018. https://ghr.nlm.nih.gov/primer/genomicresearch/genomeediting.

9 Szakál, Diana. “Environmental Social Science Research Group.” ESSRG, September 24, 2019. https://www.essrg.hu/en/.

10 “What Are Genome Editing and CRISPR-Cas9? - Genetics Home Reference - NIH.” U.S. National Library of Medicine. National Institutes of Health, April 25, 2018. https://ghr.nlm.nih.gov/primer/genomicresearch/genomeediting.

5 is transmitted to humans through the bite of infected blacklegged ticks.

Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system.11

MAT: Mice Against Ticks. This is an experimental scientific program established under the

Responsive Science initiative and led by scientist Kevin Esvelt in the Sculpting Evolution group within the MIT Media Lab.

RS: Responsive Science. “Responsive Science is a way of conducting research that invites openness and community involvement from the earliest stages of each project. Real-time interaction between scientists, citizens, and broader communities allows questions and concerns to be identified before experiments are performed, fosters open discussion, and encourages research studies and new technologies to be redesigned in response to societal feedback.”12

Scientific Community: The general community of scientists. More specifically, it may refer to researchers or groups of researchers conducting a specific scientific project.

11 “Lyme Disease.” Centers for Disease Control and Prevention. CDC. Accessed January 19, 2019. https://www.cdc.gov/lyme/index.html.

12 “About · Responsive Science.” Responsive Science. Accessed September 21, 2019. https://www.responsivescience.org/about.

Chapter 2

Background

Engagement Globally

We need to engage the public in a more open and honest bidirectional dialogue about

science and technology and their products, including not only their benefits but also their

limits, perils and pitfalls. We need to respect the public’s perspective and concerns even

when we do not fully share them, and we need to develop a partnership that can respond

to them.13

Engaging the public in an earnest dialogue on a range of scientific and environmental projects is happening across the globe as documented by the available research. Country governments, regional and local governmental agencies, public and private institutions and industry consortiums have been focusing on Community Engagement (CE) in recent years.

Discussing, developing, documenting and sharing their own definitions, concepts, and areas of focus have led to a wealth of information on CE in addition to a sometimes confusing and oftentimes conflicting notion of how to define, implement, and measure CE; its contribution to scientific projects and the communities to which those projects are aimed to serve.

In Australia, the Eliminate Dengue Program using Wolbachia-infected, transmission compromised, mosquitoes, aims to reduce the transmission of dengue. One of the most important aspects of this program was the Community Engagement component. Community

Engagement has gathered attention globally as a critical component in global health research;

13 Leshner, Alan I. “Public Engagement with Science.” Science299 (2003): 977.

7 however, “there has been little agreement about the specific goals of CE and about the best ways to design, conduct and evaluate it.”14

Dutch city councils and their importance as a democratically elected administration representing the local community was examined by Michels et al. when the researches asked 20

Dutch city councils questions such as: “What sort of democracy do you want for the community;

How important is participatory policymaking; and What will you do about inclusion, deliberation, legitimacy, civic skills and virtues and influence to strengthen local democracy.”15

Discussing these questions led to a better understanding of the role and importance of a local democracy with councilors stating they were ‘not fully aware of all these different aspects, but liked the overview. It helped them to reflect on democracy from different angles.’16

In the UK, the British Right to Challenge is a grass roots form of citizen participation that enhances local and regional involvement in policymaking and government.17 The UK-based

Nuffield Council on Bioethics, formed in 1991, is an independent body that examines and reports on ethical issues in biology and medicine. One of their aims is to: “Engage a range of public, professional, political, and policy stakeholders to ensure that the Council is aware of, and

14 Kolopack, Pamela A., Janet A. Parsons, and James V. Lavery. “What Makes Community Engagement Effective?: Lessons from the Eliminate Dengue Program in Queensland Australia.” PLOS Neglected Tropical Diseases9, no. 4 (2015): 19. https://doi.org/10.1371/journal.pntd.0003713.

15 Michels, Ank, and Laurens De Graaf. 2017. “Examining Citizen Participation: Local Participatory Policymaking and Democracy Revisited.” Local Government Studies43 (6): 875– 81. https://doi.org/10.1080/03003930.2017.1365712.

16 Inlogov, /. 2013. “Examining Citizen Participation: Theory and Practice.” INLOGOV Blog. October 3, 2013. https://inlogov.com/2013/07/22/citizen-theory-practice/.

17 Graaf, Laurens De, Merlijn Van Hulst, and Ank Michels. “Enhancing Participation in Disadvantaged Urban Neighbourhoods.” Local Government Studies41, no. 1 (2014): 44–62. https://doi.org/10.1080/03003930.2014.908771.

8 responsive, to the major issues of interest and concern to them.”18 They have launched an ongoing program examining three areas of genetic engineering techniques using CRSPR-Cas9—

An ethical review of genome editing, Social and ethical issues of genome editing and human reproduction, and Genome editing and Livestock.

In Ireland, the Aarhus Convention in 2012 and subsequent updates have recommended

“the most comprehensive, broad, active and accessible participation possible.” The Scottish

Standards for Community Engagement published in 2005 provide guidance on engagement practices between communities and the public. Developed by the Scottish Community

Development Centre (SCDC) these standards this document is the result of a countrywide effort to establish, support, inform and promote community engagement efforts to improve results.19

Serving the EU is the Budapest based Environmental Social Science Research Group

(ESSRG) employing a research approach that is collaborative and cooperative through its promotion of democratic dialogue with community and stakeholder groups. The ESSRG mission is “opening up the established systems of knowledge creation toward various forms of co-creation, including Participatory Action Research (PAR), Responsible Research and

Innovation (RRI) and citizen science.”20

In Ottawa Canada, the International Development Research Center funds research and projects aimed at health and social challenges. They have an internal tool to assess their projects

18 n.d. “Our Aims and Values.” Nuffield Bioethics. Nuffield Council on Bioethics. Accessed September 2, 2019. http://nuffieldbioethics.org/about/aims-values.

19 “The National Standards for Community Engagement,” n.d. http://www.voicescotland.org.uk/.

20 n.d. “About Us.” Environmental Social Science Research Group. ESSRG. Accessed September 3, 2019. https://www.essrg.hu/en/about-us/.

9 taking into account stakeholders, participants and the communities being addressed by their projects.21 For many projects in Canada, public consultation and engagement is legally mandated in the form of regulations requiring that public input is a component of each project.

The Massachusetts Institute of Technology’s Fab Lab Network is an example of a private research institution creating a formalized framework for public engagement through a digital fabrication laboratory and community of open-sourced software and programs to educate, invent, design and fabricate ways to improve the world. Recently, the United States National

Academies of Sciences, Engineering, and Medicine, issued a national consensus report on learning through citizen science in which it stated that the mutually reinforcing goals of these types of projects is to improve science literacy among the general public and to accumulate high- quality information.22 The US Environmental Protection Agency provides a Public Participation

Toolkit. The 96-page Toolkit is geared toward government agencies where an important aspect of their decision-making process involves public input. A key takeaway is helping to:

“recognize the difference between meaningful public participation and less valuable forms of public engagement. Most important, it will help you to select and design public participation programs to best meet the needs of your project and the publics you wish to engage.”23

21 Durose, Catherine, Liz Richardson, and Beth Perry. “Craft Metrics to Value Co- Production.” Nature562, no. 7725 (2018): 32–33. https://doi.org/10.1038/d41586-018-06860-w.

22 2018. “Data Brief: Citizen Science Papers Have More Impact.” Data Brief: Citizen Science Papers Have More Impact. Nature INDEX. November 23, 2018. https://www.natureindex.com/news-blog/data-brief-citizen-science-papers-have-more-impact.

23 2018. “Public Participation Guide: Introduction to Public Participation.” February 22, 2018. https://www.epa.gov/international-cooperation/public-participation-guide-introduction- public-participation.

Definitions of Engagement

People increasingly acknowledge that local, experiential or applied knowledge can enrich

the quality and impact of investigations. The work is more responsive, socially relevant

and connected to affected communities. What is missing are ways to measure success in

those dimensions—meaningfully, consistent, rigorously, reproducibly and equitably.24

As Durose et al. highlight, a meaningful, appropriate, systematic, consistent approach to

CE is imperative in order to effectively measure its success. In the past 25 years, many terms have been used to describe this approach, the most popular being “public deliberation” and

“participatory engagement”.25 The problem is when these terms are used interchangeably because they mean different things. The challenges facing scientists integrating CE in their research begins with the broad spectrum of CE concepts and approaches. An important point by

Lavery, when discussing what he terms Community Stakeholder Engagement (CSE): “First, the generation of useful and comparable evidence for CSE is complicated by the absence of an agreed theory of CSE.”26 Defining the practice of “Engagement” is a good starting place to examine gaps in CE and outline the theories and approaches available to scientists today.

“The relationship between science and society is often represented in terms of

24 Durose, Catherine, Liz Richardson, and Beth Perry. “Craft Metrics to Value Co- Production.” Nature562, no. 7725 (2018): 32–33. https://doi.org/10.1038/d41586-018-06860-w.

25 Jamieson, Kathleen Hall, Dan Hall Kahan, and Dietram Hall Scheufele. 2017. The Oxford Handbook of the Science of Science Communication. New York, NY: Oxford University Press, 233.

26 Lavery, James V. 2018. “Building an Evidence Base for Stakeholder Engagement.” Science361 (6402): 554. https://doi.org/10.1126/science.aat8429.

11 misunderstandings, gaps to be filled and bridges to be built.”27 The existence of this relationship and how it is formed creates the engagement dynamic.

The “science communication environment” as defined by The Oxford Handbook of The

Science of Science Communication is the “interaction of processes and cues that citizens, organizations, governments, and a host of other stakeholders, use to identify valid science and align it with their value systems, understanding of the world, and ultimately decisions.”28

Engagement, as defined by the National Academies of Sciences, Engineering, and

Medicine in Gene Drives on the Horizon, Advancing Science, Navigating Uncertainty, and

Aligning Research with Public Values, is: “Seeking and facilitating the sharing and exchange of knowledge, perspectives, and preferences between or among groups who often have differences in expertise, power, and values.”29

ESSRG states that “Stakeholder involvement refers to participation of interest groups (i.e. representatives of locally affected communities, national or local government authorities, politicians, civil society organizations and businesses) in a planning or decision making process.”30 They go on to say environmental management and affective decisions must essentially involve stakeholders as it’s a critical component of ecosystem services.

27 Bucchi, Massimiano, Bucchi, and Brian Trench. 2014. Routledge Handbook of Public Communication of Science and Technology. Routledge.

28 Jamieson, Kathleen Hall, Dan Hall Kahan, and Dietram Hall Scheufele. 2017. The Oxford Handbook of the Science of Science Communication. New York, NY: Oxford University Press.

29 2016. Gene Drives on the Horizon: Advancing Science, Navigating Uncertainty, and Aligning Research with Public Values. Washington, D.C.: The National Academies Press, 131.

30 Hauck, J., H. Saarikoski, F. Turkelboom, and H. Keune. 2016. Stakeholder Analysis in Ecosystem Service Decision-Making and Research.

Environmental and ecosystem research is a field where many research projects referencing stakeholder engagement and its importance may be found.

“Deverka et al. define engagement as: an iterative process of actively soliciting the knowledge, experience, judgement and values of individuals selected to represent a broad range of direct interest in a particular issue, for the dual purpose of creating a shared understanding; making relevant, transparent and effective decisions.”31

Rowe et al. state: “Public participation may be loosely defined as the practice of consulting and involving members of the public in the agenda-setting, decision-making, and policy-forming activities of the organization or institutions responsible for such functions.”32

The International Associations for Public Participation (IAP2) provides for the following definition:

Public participation means to involve those who are affected by a decision in the

decision-making process. It promotes sustainable decision by providing participants with

the information they need to be involved in a meaningful way, and it communicates to

participants how their input affects the decision. The practice of public participation

might involve public meetings, surveys, open houses, workshops, polling, citizens’

advisory committees and other forms of direct involvement with the public.33

31 Boaz, Annette, Stephen Hanney, Robert Borst, Alison O’Shea, and Maarten Kok. 2018. “How to Engage Stakeholders in Research: Design Principles to Support Improvement.” Health Research Policy and Systems16 (1). https://doi.org/10.1186/s12961-018- 0337-6, 2.

32 Bucchi, Massimiano, Bucchi, and Brian Trench. 2014. Routledge Handbook of Public Communication of Science and Technology. Routledge, 127.

33 n.d. https://www.iap2.org/page/A3.

Definitions of Community

There is an “extraordinary variability” in key terms used when discussing the subject of engagement, Lavery writes in Building an evidence base for stakeholder engagement. This author would like to gently point out Lavery proves this point by omitting “community” from his title. Lavery defines a community as “at least those individuals who share identified risks and associated with the proposed research.”34 The National Academies of Sciences, Engineering, and Medicine in Gene Drives on the Horizon, Advancing Science, Navigating Uncertainty, and

Aligning Research with Public Values outlines the following definitions:

Communities: groups of people who live near enough to a potential field trial or release

site that they have a tangible and immediate interest in the project.

Stakeholders: having professional or personal interests sufficient to justify engagement

but may not have geographic proximity to a potential release site.

Publics: (plural form signifying public audiences are subsets of the population as a

whole) represent groups who lack the direct connection to a project that stakeholders and

communities have but nonetheless have interests, concerns, hopes, fears, and values that

can contribute to democratic decision making. Note—individuals may belong to more

than one group.35

34 Lavery, James V., Paulina O. Tinadana, Thomas W. Scott, Laura C. Harrington, Janine M. Ramsey, Claudia Ytuarte-Nuñez, and Anthony A. James. 2010. “Towards a Framework for Community Engagement in Global Health Research.” Trends in Parasitology26 (6): 280. https://doi.org/10.1016/j.pt.2010.02.009.

35 2016. Gene Drives on the Horizon: Advancing Science, Navigating Uncertainty, and Aligning Research with Public Values. Washington, D.C.: The National Academies Press, 131- 132.

Figure 1: Definitions of Publics, Stakeholders, and Communities Source: Gene Drives on the Horizon: Advancing Science, Navigating Uncertainty, and Aligning Research with Public Values. The National Academies Press, 2016.

The Routledge Handbook of Public Communication of Science and Technology makes it known that the use of “publics” as a noun versus an adjective (for instance in “public sphere” or

“public interest) is evidence of the shifting boundaries between roles that are played by the groups of people scientists aim to engage.36 Defining the pertinent “community” or proper

36 Bucchi, Massimiano, Bucchi, and Brian Trench. 2014. Routledge Handbook of Public Communication of Science and Technology. Routledge.

“stakeholder” in available scholarship is murky at best and this opacity exacerbates the vague reporting on CE by scientists today.37

Defining “stakeholders” according to the OpenNESS project, part of ESSRG, is: “any group or individual who can affect or is affected by the ecosystem’s services.”38 Deverka et al. includes the definition of stakeholders to be: “individuals, organizations or communities that have a direct interest in the process and outcomes of a project, research or policy endeavor.”39

How a research team defines its target audience will inform how they approach their engagement efforts. This is one of the earliest steps in the engagement concepts that will be outlined in the subsequent section. It’s critical to examine how the MAT project team defines its target audience and why such a definition was adopted relevant to its project goals pertaining to openness and engagement.

Engagement Concepts

Science communication in the preceding decades was approached with the de facto goal of raising scientific literacy amongst the laity. This is called the “deficit model” and was widely accepted as an appropriate approach to imbuing the masses with the factual information that was required to make informed decisions. Many scientists now consider this one-way approach of communication problematic, recognizing that this type of engagement is more an information

37 Lavery, James V. 2018. “Building an Evidence Base for Stakeholder Engagement.” Science361 (6402): 554. https://doi.org/10.1126/science.aat8429.

38 Hauck, J., H. Saarikoski, F. Turkelboom, and H. Keune. 2016. Stakeholder Analysis in Ecosystem Service Decision-Making and Research.

39 Boaz, Annette, Stephen Hanney, Robert Borst, Alison O’Shea, and Maarten Kok. 2018. “How to Engage Stakeholders in Research: Design Principles to Support Improvement.” Health Research Policy and Systems16 (1). https://doi.org/10.1186/s12961-018- 0337-6, 2.

16 transfer versus a dialogue. In a move away from the deficit model and to improve scientific communication, scientists are increasingly approaching CE with a two-way approach in mind.

The next evolutionary step is a multiway dialogue involving publics, stakeholders, representatives, scientists, and policymakers). An effective model for science communication involves residents’ input, concerns, feedback etc. into scientific developments.40 Choosing a general philosophical approach to CE, as well as an overall framework, a system of engagement, measurement; and ultimately a measurement of CE performance is a daunting challenge for researchers today.

An empirical analysis of 120 cases in western countries of four different types of

democratic innovation showed that deliberative forums and surveys appear to be better at

promoting the exchange of arguments, whereas referendums and participatory

policymaking projects are better at giving citizen influence on policymaking and

involving more people.41

Participation on science and technology should be considered according to three purposes: policymaking, public dialogue, and for knowledge production. These categories may overlap, and the purpose may fall within more than one category.42

40 Jamieson, Kathleen Hall, Dan Hall Kahan, and Dietram Hall Scheufele. 2017. The Oxford Handbook of the Science of Science Communication. New York, NY: Oxford University Press, 25.

41 Michels, Ank, and Laurens De Graaf. 2017. “Examining Citizen Participation: Local Participatory Policymaking and Democracy Revisited.” Local Government Studies43 (6): 875– 81. https://doi.org/10.1080/03003930.2017.1365712.

42 Bucchi, Massimiano, Bucchi, and Brian Trench. 2014. Routledge Handbook of Public Communication of Science and Technology. Routledge, 126. 17

Purposes Primary actors/sponsors Examples Policymaking Government, research institutions, Consensus conferences, citizen internal organizations, stakeholder juries, deliberative polls, negotiated organizations, citizen panels, rulemaking, crowdsourcing Dialogue Government, research institutions, Science cafes, festivals, art/science scientist/research networks, exhibits, online discussion boards stakeholder organizations, public collectives Knowledge production Scientists/research networks, Citizen science, traditional community groups, citizens knowledge, crowdsourcing

Figure 2: Categorizing public participation Source: Bucchi, Massimiano, Bucchi, and Brian Trench. 2014. Routledge Handbook of Public Communication of Science and Technology. Routledge, 126.

In democracies, the importance of inclusive citizen participation in not only ratifying policy but the process of crafting policy essentially underpins the multitude of approaches we see today. “Theories of participatory democracy, deliberative democracy and social capital assert that citizen involvement has positive effects on democracy.”43 To confront and properly negotiate the challenges we face today with genetic engineering, climate change, and global health, public engagement is needed. Questions that had in the past been seen as strictly left for scientists will need public involvement.44 Expert panels, policymakers, advisory committees are not enough to address these issues and the agencies developing the solutions will need to seek public input.45

Co-creation or co-production has inherent challenges, including clarity of roles,

43 Michels, Ank, and Laurens De Graaf. 2017. “Examining Citizen Participation: Local Participatory Policymaking and Democracy Revisited.” Local Government Studies43 (6): 875– 81. https://doi.org/10.1080/03003930.2017.1365712.

44 Kitcher, Philip. 2003. Science, Truth, and Democracy. Oxford: Oxford Univ. Press. 45 Jamieson, Kathleen Hall, Dan Hall Kahan, and Dietram Hall Scheufele. 2017. The Oxford Handbook of the Science of Science Communication. New York, NY: Oxford University Press, 233.

18 recognition of power imbalances, continuous information exchange, and active overseers.

Boivin recommended three critical areas:

Credibility—participants need to understand and value each other’s knowledge

Legitimacy—participants need clarity on who they represent (patients, an institution, a profession)

Power—participants need to have the ability to influence decision.46

As Lavery notes, “there is limited empirical evidence on the best practices for stakeholder engagement and even less on evaluation of engagement demonstrating the association between the quality and quantity of engagement and research outcomes.”47 This may explain why we find an abundance of concepts available for employment, created or adopted by various governmental and professional bodies.

EPA

According to the US Environmental Protection Agency; Public participation can be any process that directly engages the public in decision-making and gives full consideration to public input in making that decision.48

46 Boivin, Antoine, Pascale Lehoux, Jako Burgers, and Richard Grol. “What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation.” Milbank Quarterly92, no. 2 (2014): 319–50. https://doi.org/10.1111/1468-0009.12060.

47 Lavery, James V. 2018. “Building an Evidence Base for Stakeholder Engagement.” Science361 (6402): 554. https://doi.org/10.1126/science.aat8429.

48 “Public Participation Guide: Introduction to Public Participation,” February 22, 2018. https://www.epa.gov/international-cooperation/public-participation-guide-introduction-public- participation.

Figure 3: Public Participation Guide Source: 2018. “Public Participation Guide: View and Print Versions.” EPA. Environmental Protection Agency. January 2, 2018. https://www.epa.gov/international-cooperation/public- participation-guide-view-and-print-versions.

IAP2

The International Association for Public Participation was formed in 1990 and is a global organization with numerous affiliates. It offers professional resources, training, certification, and membership. “IAP2 is an international association of members who seek to promote and improve the practice of public participation in relation to individuals, governments, institutions, and other entities that affect the public interest in nations throughout the world. IAP2’s mission is to provide public participation practitioners around the world with the tools, skills, networking

20 and training opportunities to advance and extend the practice of public participation.”49

Figure 4: Public Participation and its Impact on the Decision Source: n.d. https://www.iap2.org, 3 Pillars.

National Institutes of Health’s Recombinant DNA Advisory Committee (RAC)

Presently, the RAC provides significant opportunity for public involvement in the oversight of human gene-transfer or genome-editing protocols. RAC reviewed the first human

CRISPR/Cas9 genome-editing trial in the United States in accordance with their oversight criteria in June 2016. RAC meetings require advanced notice, public access, real time webcasting and publicly available archives.50

49 n.d. https://www.iap2.org/page/A3.

50 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, District of Columbia: National Academies Press. 21

National Institute of Environmental Health Sciences

The National Institute of Environmental Health Sciences (NIEHS) is an established leader in the researcher-community collaborative approach having proven itself by promoting such engagement for many decades. The various strategies employed by the NIEHS to respond to the community are workshops, community advisory groups, retreats, and Town Meetings.

The Town Meetings platform is an effective venue for the NIEHS allowing communities to become involved in environmental initiatives.51Through community-university partnerships the

NEIHS has advanced its mission of disease prevention by engaging with the community to take an active role in all aspects of its research.52

National Bioethics Commissions

All gene therapy and genome-editing studies must be approved at the local level by a research institutional review board (IRB) and institutional biosafety committee (IBR), both of which are required to include public representatives in their membership.53

51 O'Fallon, Liam R, Geraldine M Wolfle, David Brown, Allen Dearry, and Kenneth Olden. 2003. “Strategies for Setting a National Research Agenda That Is Responsive to Community Needs.” Environmental Health Perspectives111 (16): 1856. https://doi.org/10.1289/ehp.6267.

52 O'Fallon, Liam R., and Allen Dearry. 2001. “Commitment of the National Institute of Environmental Health Sciences to Community-Based Participatory Research for Rural Health.” Environmental Health Perspectives109: 469. https://doi.org/10.2307/3434797.

53 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, District of Columbia: National Academies Press.

OpenNESS

OpenNESS emphasizes a transdisciplinary approach built on strong stakeholder involvement across many levels of decision making. Their belief is that a high level of engagement will improve the impact and usefulness of their outputs. The involvement of stakeholders in OpenNESS programs ranges from local level interaction for smaller scale projects to multi-country EU level stakeholders when working on regulatory framework projects, for instance.54

Figure 5: Level of Engagement and its Relationship to Level of Decision Making Source: Hauck et al., Stakeholder Analysis, 3.

United Kingdom, Denmark, and France

Below are examples of engagement efforts conducted in the United Kingdom,

Denmark, and France.

54 Hauck, J., H. Saarikoski, F. Turkelboom, and H. Keune. 2016. Stakeholder Analysis in Ecosystem Service Decision-Making and Research.

United Kingdom Denmark France

Solicits entities outside of the Longstanding experience in Citizen panels bring government, especially specialists public consultation attention to new social in communication and Web demands and needs for Emergence of ethical issues resources, to create its public new legal approaches to raised by citizen groups that consultation structure novel technologies policy makers have not Single-issue focus in its considered Widespread media consultation dissemination of panel Report content taken into discussions Wide variety of ways citizens consideration by policy decision provide input, including makers via an independent Proliferation of other workshops, meetings, online agency that informs and advises forums for discussion questionnaires, and interactive the government subsequent to the public website forums consultation

Figure 6: Attributes of Public Engagement Source: 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, District of Columbia: National Academies Press.

In Denmark there has been a long history of soliciting the public for feedback on a range of topics in public health, scientific research and agriscience.

Modalities Strengths Weaknesses

These represent The final report is taken The members of a citizen panel selected one of the earliest seriously by the DBoT, which through such a top-down system can never and most uses it to advise the Danish be truly representative of the population at referenced of Parliament. Hence citizens' large. consensus voices are fully integrated into The careful monitoring of citizen panel conferences (late the debating chambers of the members to minimize imbalances due to 1980s). government. age, geographic location, gender, A representative This solicitation of input from socioeconomic status, and cognitive and sample is selected Danish citizens prior to personality differences, as well as level of recruited; around any form of legislative debate interest in the topic(s), tends to create an 2,000 randomly allows policy makers to identify “idealized” group of people meant to selected citizens ethical issues they may not even represent the real world, when such is not are invited to have considered, as well as gives the case. apply. them time to adjust policy Hence, this highly selective procedure proposals in light of the citizen The Danish Board means that those selected already have a report. of Technology pronounced interest in the topic at hand. (DBoT, an This in turn increases citizens' Thus, inclusion of those who need more independent body levels of trust in government. exposure to and education on the topic created by the under consideration is neglected. Many academics, and others as Danish well, consider the Danish The final citizens' report must be a Parliament) then consensus conference to be a consensus; hence no dissension is either selects 14-16 model unto itself. allowed or included in the document. panel members to participate in the conference.

These citizens are introduced to and briefed on the topic(s) at hand by an expert journalist.

They then meet for extensive discussion among themselves.

rafta report express

Figure 7: Public Engagement in Denmark Consensus Conference Source: 2017. Human Genome Editing: Science, Ethics, and Governance. Washington, District of Columbia: National Academies Press.

As outlined above, a multitude of agencies in the US and Europe offer their own

25 engagement strategies allowing, often promoting, the sharing of ideas and adoption by others to plan and improve engagement. Project teams are not necessitated to create a new engagement strategy as it’s highly likely there is an applicable existing engagement approach they can adopt or utilize a variety of styles for a conglomerate approach. The CE approach enlisted by MAT will be evaluated in ensuing sections.

History of Community Engagement

The growth in political populism and rising public dissatisfaction with policies some

people see as excluding their interests have made it more important for researchers to

produce—and to be seen to produce—research that is both beneficial and relevant to

society. Efforts to do so are overdue. The onus is on researchers and those who support

them to put systems in place to encourage more collaborations.56

In democratic societies, the public is asked to make certain judgements about new, strange and complicated scientific issues. Historically, there have been scattered smatterings of small and disconnected workshops, gatherings, panels, and conferences. Even with such disparate and downplayed approaches, the engagement process ultimately has the potential to influence policy.

Since the 1970’s, co-production has been a popular approach, particularly among social scientists. Co-production involves individuals who hope to benefit from the work partnering

56 “Power to the People.” Nature562 (2018): 7.

26 with policymakers, communities and the interested public.57 According to the National

Academies of Sciences, Engineering, and Medicine, the emergence of CRISPR/Cas9 and its use in genome editing requires a broad and immediate dialogue between scientists, governing institutions and the public. These calls to action go back many decades, and in 1975 the Asilomar

Conference convened a group of international scientists who decided the use of recombinant

DNA should be strictly controlled.58 They agreed that a consensus should be reached before proceeding with this type of cutting-edge research. Institutional initiatives aimed at engaging publics in policy issues relating to controversial environmental topics were newsworthy in the

1980s and 1990s employing public hearings and negotiated rule-making seen mostly in the US.59

In 1989, a panel convened in Denmark to discuss gene sequencing, a small diverse group of 15 members of the public were assembled with 15 gene-sequencing experts. The group saw a need for genetic screening by families impacted by genetic disease but were worried about widespread application of the technology; particularly by insurance companies that could excluding patients based on genetic results. The outcome of that landmark event eventually led to the Danish Parliament prohibiting genetic screening for health-insurance purposes in 1997.60

A 1996 study in the US was conducted across a national cross-section regarding age,

57 “Power to the People.” Nature562 (2018): 7.

58 Human Genome Editing: Science, Ethics, and Governance. Washington, District of Columbia: National Academies Press., 2017.

59 Fiorino, Daniel J. 1990. “Citizen Participation and Environmental Risk: A Survey of Institutional Mechanisms.” Science, Technology, & Human Values15 (2): 226–43. https://doi.org/10.1177/016224399001500204.

60 Burall, Simon. “Rethink Public Engagement for Gene Editing.” Nature555, no. 7697 (2018): 438–39. https://doi.org/10.1038/d41586-018-03269-3.

27 gender, ethnicity, and education level meeting in groups of 40 across 4 cities—Los Angeles,

Chicago, Nashville, and Hartford. The study was conducted by Public Agenda on how the general public could make more informed judgments about scientifically complex issues. When the study concluded there were a number of main conclusions drawn—1) The public has the ability to thoroughly assess even very scientifically complex issues featuring areas of substantial expert uncertainty; 2) After learning and discussing about technical issues people’s thinking will shift so that inconsistencies are minimized and guidelines on acceptable policy will emerge; 3)

The public’s views generally will align with experts but differences that persists may stem from different values and not levels of understanding; 4) Lack of expertise is not necessarily what blocks the public from thoughtfully considering scientific issues, having a framework detailing choices and tradeoffs seems to be more important61

Writing in 2005, Nisbet defined a significant challenge the scientific community faces when operating under a misconception that public opinion about controversial issues related to science and technology, many scientists assume that increased public understanding of science will lead to increased public support. Yet, instead of a fully informed and deliberative public, prior research suggests that it is more likely that the public by nature is ‘miserly’, with individuals relying on their value predispositions and only the information most readily available to them from media sources in order to form an opinion.62 Further complicating matters, Nisbet

61 “Productive Policy Depends On Public's Understanding Of Scientific Issues.” The Scientist Magazine®, n.d. https://www.the-scientist.com/opinion-old/productive-policy-depends- on-publics-understanding-of-scientific-issues-57970.

62 Nisbet, M. C. 2005. “The Competition for Worldviews: Values, Information, and Public Support for Stem Cell Research.” International Journal of Public Opinion Research17 (1): 90–112. https://doi.org/10.1093/ijpor/edh058.

28 continues by highlighting a national survey data collected in the United States in 2001-2002 indicates that although an increase in awareness leads to an increase in support for scientific research, both religious and ideological value predispositions strongly moderate the impact of awareness63

In 2011, the UK government program ScienceWISE sponsored public dialogue discussing experiments involving the transfer of DNA between animal and human cells. Once again, the community engagement process influenced policy leading to the 2016 publication by the UK Home Office—Guidance on the use of Human Materials in Animals. Recently, leading scientists have called for global deliberation on the possible effects of gene editing and in the view of Jasanoff and Hurlburt writing in Nature—the discussions that have taken place fall far short of the expansive, cosmopolitan conversation that is needed.64 The 2015 Summit on Human

Gene Editing held in Washington, DC called for “broad societal consensus” on the norms that should guide research. Furthermore, Jasanoff and Hurlburt insist—"methods must be found to get people to engage substantively with each other and an entirely new type of infrastructure is needed to promote a richer, more complex conversation, one that does not originate from scientific research agenda but that instead invites multiple viewpoints”.65

In 2017 and 2018, The National Academies of Sciences, Engineering, and Medicine have issued reports related to genetically modified crops, gene drives, and human genome editing that

63 Nisbet, M. C. 2005. “The Competition for Worldviews: Values, Information, and Public Support for Stem Cell Research.” International Journal of Public Opinion Research17 (1): 90–112. https://doi.org/10.1093/ijpor/edh058.

64 Jasanoff, Sheila, and J. Benjamin Hurlbut. 2018. “A Global Observatory for Gene Editing.” Nature555 (7697): 435–37. https://doi.org/10.1038/d41586-018-03270-w.

65 Jasanoff and Hurlbut, “A Global Observatory,” 435–37.

29 have specifically called for public outreach initiatives and to integrate these discussions into the projects.66 Scheufele and Beier writing for Scientific American eloquently point out “for the scientific community, this will sometimes mean going beyond their comfort zone and engaging with a wide variety of audiences on questions of faith, morality, and values. It also means that the reason for the scientific community to engage in these debates is not to convince people of particular viewpoints or to promote this new technology. Instead, what all public engagement efforts should have in common is a commitment to listening to and respecting the voices of others, including ones form audiences less versed in the details or facts of the subject matter.

And listening can start long before the engagement itself, using public opinion surveys, focus groups, and a host of other tools”.67

Presently, the European Commission’s Responsible Research and Innovation (RRI) is working to align science and innovation outcomes with society’s values. It involves public engagement, open access, gender equality, science education, ethics, and governance across all scientific disciplines engaging all “actors” in society.68 In the US, community-based participatory research is a model being applied to research that engages Native American and other indigenous populations. Building on previous decades of CE efforts researchers working in these communities see community participation as the predominant research approach and

66 Scheufele, Dietram A., Michael A. Xenos, Emily L. Howell, Kathleen M. Rose, Dominique Brossard, and Bruce W. Hardy. 2017. “U.S. Attitudes on Human Genome Editing.” Science. American Association for the Advancement of Science. August 11, 2017. http://science.sciencemag.org/content/357/6351/553.

67 Scheufele, Dietram A. 2017. “Human Genome Editing: Who Gets to Decide?” Scientific American Blog Network. May 18, 2017. https://blogs.scientificamerican.com/observations/human-genome-editing-who-gets-to-decide/.

68 Caixa. n.d. “RRI Tools.” RRI. European Union. https://www.rri-tools.eu/about-rri.

30 essential in connecting with these local populations and paramount to a successful research project. The scientific disciplines utilizing this approach vary and include climate change scientists, public health officials, and cutting-edge genetic engineering researchers. A potential pitfall all these researchers share is falling victim to the biases he or she carries with them thus emphasizing the importance of learning from these communities they aim to serve.69

69 Willyard, Cassandra, Megan Scudellari, and Linda Nordling. 2018. “How Three Research Groups Are Tearing down the Ivory Tower.” Nature562 (7725): 24–28. https://doi.org/10.1038/d41586-018-06858-4.

Chapter 3

Examining Responsive Science and Mice Against Ticks

Responsive Science

While science has traditionally been done behind closed doors, the increasing power of

technology to alter our shared environment makes it imperative for us to switch to an

open and community-driven process.70

The above excerpt is from the Responsive Science homepage and provides the foundation for the research team’s appeal for a novel approach to conducting science in the open. Perhaps the introduction of a newly designed model versus a claim to origination is more accurate. The

“Responsive Science” Model is derived from the 1990 Hixon Forum held at Harvey Mudd

College in Claremont, CA. The notion of Responsive Science is the commitment to address normative questions that inevitably rise from pioneering and potentially disruptive technologies.

“Responsive Science is defined through two-way, mutual interaction and thus goes beyond a one-sided being responsible”71 There are two guiding principles of Responsive Science—1.) openness and transparency of the science from the project’s beginning, 2.) public engagement that allows for a “community-driven” project. RS is the basis for the CE approach utilized in

70 “Responsive Science.” Responsive Science. Accessed September 21, 2019. https://www.responsivescience.org/.

71 Lunshof, Jeantine. (2019). Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems.

MAT and therefore must be evaluated, based on the available information, before examining

MAT.

In order to appropriately address the ethical questions, real-world data are needed to

identify and examine perceptions, values, and preferences concerning the potential

ecological interventions of the individuals and communities involved. The online

platform “Responsive Science” will be an important tool for direct communication

between scientists, stakeholders, and the community at large.72

The RS contributions includes eight submissions by team members posted on the

Responsive Science website, seven submissions are from October or December 2017 and one is from April 2018. These submissions emphasize CE as a foundational building block of RS and outline various interpretations of CE and its importance when proposing and deploying transformational technologies such as genetic engineering and gene drives. The references to CE in these submissions describe the broad efforts—and the goals—using general terms and bromides one would generally agree with. A systematic outline of RS such as a defining process or specific protocol are not provided online for public reaction and input. Admittedly, the

Responsive science team confesses it is early days for their concept of RS and they are still

“working out what that means.”73

72 Esvelt, Kevin, Joanna Buchthal, and Jeantine Lunshof. “Greenwall Foundation Grant Application · Responsive Science.” Responsive Science, October 16, 2017. https://www.responsivescience.org/pub/greenwall-grant-application. 73 Evans, Sam Weiss. “What Is Responsive Science: Sam's Perspective · Responsive Science.” Responsive Science, 2017. https://www.responsivescience.org/pub/what-is-responsivescience-sams-perspective.

The “About” tab on the Responsive Science website provides a description of RS and

CE:

Responsive Science is a way of conducting research that invites openness and

community involvement from the earliest stages of each project. Real-time interaction

between scientists, citizens, and broader communities allows questions and concerns to

be identified before experiments are performed, fosters open discussion, and encourages

research studies and new technologies to be redesigned in response to societal feedback.

Community Involvement. Transparency and societal accountability are critical for any

research that involves the shared environment. Responsive Science currently focuses on

applied ecological research, including gene drive systems for altering wild populations.

Discussions are facilitated by PubPub, a unique collaborative tool for sharing and

evaluating research, and our dedicated team.

Wise Choices. Increasingly powerful technologies demand greater wisdom. Share your

thoughts on early stage projects to shape a better future for society and the natural

world.74

It is unambiguous the RS team would like the open sharing of ideas to make “science and engineering more cooperative, efficient, and responsive to society.”75 The website is a “space

74 “About · Responsive Science.” Responsive Science. Accessed September 21, 2019. https://www.responsivescience.org/about.

75 Esvelt, Kevin. “On Responsive Science · Responsive Science.” Responsive Science, 2017. https://www.responsivescience.org/pub/on-responsive-science.

34 where we, meaning you and everyone else, can work through what the concept of responsive science means by acting it out and reflecting on the results.”76 It is clear that RS seeks to invite everyone to participate and enable the sharing of suggestions by both citizens and scientists.

What is missing is a place on the RS website for this participatory interaction between publics and scientists. These days, interactions of this nature mostly take place in comments sections available within a website posting or blog or online forums allowing conversation threads that can be left idle and restarted in the future (as members of the online community revisit or new members join the conversation). In the absence of IT tools enabling connections and interactions between publics and scientists, a dialogue through the sharing and exchange of information or real-time interaction can only be realized through in-person or group meetings like the public events held on Martha’s Vineyard. This severely limits the type of interactions that the RS team intends to foster and encourage.

The research team has designated CE as a critically valuable component of MAT, and they acknowledge that enabling the community is imperative for CE to be successful. The establishment of this new model of Responsive Science is yet to be realized and/or documented in the presently available published material by the RS team. To fill the gaps identified in

Responsive Science the team may do the following:

1. Define community engagement within the Responsive Science model

2. Provide a Responsive Science construct

A clear definition of CE will allow the scientists and the community to understand what it is to successfully achieve CE. A tangible RS model will allow scientist and the community to

76 Evans, Sam Weiss. “What Is Responsive Science: Sam's Perspective · Responsive Science.” Responsive Science, 2017. https://www.responsivescience.org/pub/what-is-responsivescience-sams-perspective.

35 understand how they are to successfully achieve CE.

Mice Against Ticks

“While a strong case can be made for democratic principles. The realization of truly democratic decision making at the implementation level remains challenging.”77

From the Responsive Science website “Public Presentations and Slide Decks” page:

Mice Against Ticks is an open, community-guided project which aims to safeguard

islands like Martha’s Vineyard and Nantucket by stably reducing the incidence of tick-

borne disease. The communities of Martha's Vineyard and Nantucket are directing this

MIT based project to immunize the local mouse population in order to permanently break

the transmission cycle between white-footed mice and ticks. This long-lasting, ecological

solution should reduce the number of infected ticks, prevent new human infections and

profoundly impact this growing public health challenge.

Before conducting any experiments in the lab, the Mice Against Ticks team approached

the citizens of Nantucket and Martha’s Vineyard to test their interest and seek their input.

Over the past few years, their team has repeatedly visited the islands to answer questions

and ask some of their own. Information on many of their public presentations can be

found here, including links to video recordings and slide decks from presentations on

Nantucket, Martha’s Vineyard and Cuttyhunk.

77 Lunshof, Jeantine. “Exploring the Area · Responsive Science.” Responsive Science, 2017. https://www.responsivescience.org/pub/responsive-science--exploring-the-area.

Watch these videos to become more familiar with the project or scroll to the end to hear

from island residents and visitors as they participate in public Q&A sessions. Should

questions of your own arise as you watch and listen, please do not hesitate to reach out.

We want to hear from you!78

The MAT project on Martha’s Vineyard is a scientific project that will utilize CRISPR to genetically engineer white-footed mice that are heritably immune to Lyme bacterium and tick saliva. Since the primary reservoir of Lyme disease is the white-footed mouse, this will significantly reduce the transmission of Lyme disease when released into the wild. Martha’s

Vineyard was chosen because of the high disease burden, well-educated population, and the democratic norms, particularly the New England town-hall style meetings.79 Martha’s Vineyard has a complexity of residents and communities—comprised of 6 towns—Aquinnah, Chilmark,

Edgartown, Oak Bluffs, Tisbury (Vineyard Haven), and West Tisbury. Each of the 6 towns have their own board of health. These communities are socioeconomically and educationally diverse and in addition to the year-round residents there are seasonal residents and visitors that increase the island population by a factor of ten.80 These are factors that contribute to the challenging nature of engaging the holistic community of Martha’s Vineyard.

78 Esvelt, Kevin, and Joanna Buchthal. “Public Presentations & Slide Decks · Responsive Science.” Responsive Science. Accessed September 24, 2019. https://www.responsivescience.org/pub/preventing-tick-borne-disease-presentation.

79 Esvelt, Kevin, Joanna Buchthal, and Jeantine Lunshof. “Greenwall Foundation Grant Application · Responsive Science.” Responsive Science, October 16, 2017. https://www.responsivescience.org/pub/greenwall-grant-application.

80 Buchthal, Joanna, Sam Weiss Evans, Jeantine Lunshof, Sam R. Telford, and Kevin M. Esvelt. “Mice Against Ticks: an Experimental Community-Guided Effort to Prevent Tick-Borne 37

As Lavery highlights, generic approaches to CE are unlikely to serve as a reliable guide

“when the science is controversial, or when the human contexts are most complex and/or contentious.”81 Under these circumstances, he argues, is when effective CE is most valuable.

Fundamental questions must be asked by the researchers who have decided to build their respective programs using a CE framework—How much and what kind of CE is necessary?

How can we best address stakeholders’ interests? How do stakeholders want to be engaged?

These underlying questions must be answered as they are integral to the ethical foundation for

CE.82

The MAT team has been involved in nine local presentations to the Martha’s Vineyard community beginning in 2016. It’s important to examine these postings as a community member would—approaching the website with an interest in learning more about MAT and perhaps to engage with the scientists on the research team and other interested and involved citizens.

Public Presentations & Slide Decks (Martha’s Vineyard)

July 2016 Martha’s Vineyard health agents meeting

July 2016 Edgartown Public Library

October 2016 Martha’s Vineyard All-island Board of Health meeting

Mar 2017 Edgartown Board of Health

May 2017 Aquinnah Board of Health

Disease by Altering the Shared Environment.” Philosophical Transactions of the Royal Society B: Biological Sciences374, no. 1772 (2019): 6. https://doi.org/10.1098/rstb.2018.0105.

81 Lavery, James V. “Building an Evidence Base for Stakeholder Engagement.” Science361, no. 6402 (September 2018): 555. https://doi.org/10.1126/science.aat8429. 82 Lavery, “Building an evidence base,” 555.

May 2017 MV High School

December 2017 Steering Committee meeting on MV

July 2018 Vineyard Haven

July 2018 Meeting with Wampanoag Tribe

Five of these community presentations are available to the public on the Responsive

Science website:

December 2015 Exploratory Workshop—Slide deck is posted. In the slides there is no reference to RS or CE.

July 2016 Edgartown Public Library—Video recording of this meeting is posted.

March 2017 Edgartown Board of Health—Slide deck is posted. One slide refers to RS:

“Open, Community-Driven Science, Clear benefits to citizens, Discussions before experiments,

Safeguards agreed upon early, Developed/run as a nonprofit, Independent monitoring and analysis, Open and responsive science. The projects will only move forward if embraced by the community.”83

May 2017 Aquinnah Board of Health— Slide deck is posted. There are two slides referring to RS. First slide: “Open, Community-Driven Science, Clear benefits to citizens,

Discussions before experiments, Safeguards agreed upon early, Developed/run as a nonprofit,

83 Esvelt, Kevin, and Joanna Buchthal. “Public Presentations & Slide Decks · Responsive Science.” Responsive Science. Accessed September 23, 2019. https://www.responsivescience.org/pub/preventing-tick-borne-disease-presentation.

Independent monitoring and analysis, Open and responsive science. The projects will only move forward if embraced by the community.”84 Second slide: “Local, Open, Community-Responsive

Science, Focus on the most urgent need first, Openly share proposals before experiments begin,

Actively invite concerns, Request community guidance, Arrange for independent assessment,

Nonprofit, Start local and scale up.”85

May 2017 MV Regional High School— Slide deck is posted. One slide refers to RS:

“Open, Community-Driven Science, Clear benefits to citizens, Discussions before experiments,

Safeguards agreed upon early, Developed/run as a nonprofit, Independent monitoring and analysis, Open and responsive science. The projects will only move forward if embraced by the community.”86

July 2018 Vineyard Haven Community meeting— Video recording of this meeting is posted.

The importance of RS as guiding principle is understated in the available slide deck presentation. There is typically only one slide dedicated to community engagement in MAT.

Remembering that CE is the launch pad and driving force behind MAT, one slide seems insufficient. Providing details on—how the engagement will be done, the various platforms available to the scientists and the community to engage, and a conceptual RS framework would

84 Esvelt and Buchthal. “Public Presentations.”

85 Esvelt and Buchthal. “Public Presentations.”

86 Esvelt and Buchthal. “Public Presentations.”

40 allow both sides to understand the community engagement goals and plot the course from project initiation to completion.

Greenwall Foundation Grant

This is a grant that examines bioethical concerns related to genome editing in shared ecosystems and how would such a project would go from idea to “accepted” by a community.

The focus of this exercise is understanding what is meant by “acceptable” and evaluating

Responsive Science as a model for the scientist-community interactions. In the Final Report,

Part 1 Bioethics; challenges in the communication and engagement efforts with the community are brought to light as an ethical concern; more precisely the MAT team “has shown how difficult it is to live up to the claim of openness and transparency.”87 Concern for the gaps within Responsive Science and their impact on MAT are highlighted, but the report expresses a belief that the RS model can be “rescued” (and deliver upon its promises) by readdressing the claims of transparency and community guidance “in order to account for the complexity of the science and the social and political reality of the project locations.”88

The Tick-Borne Disease Research Program (TBDRP)

“The Tick-Borne Disease Research Program (TBDRP) was established in 2016 to support innovative and impactful research that addresses these fundamental issues and gaps in tick-borne diseases.”89 The MAT project’s CE approach is described as an early success

87 Lunshof, Jeantine. “Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems,” 2019.

88 Lunshof, Jeantine. “Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems,” 2019.

89 Esvelt, K., & Buchthal, J. (2017). Tick-Borne Disease Research Program Grant Application. Responsive Science. Retrieved from https://www.responsivescience.org/pub/dod- tick-borne-disease-research-program 41 attributed to the novel commitment to community-driven science by involving local communities in decision-making from the earliest stages90 To back up these claims, the project team should provide more context on what it is that makes their CE approach unique. Also required is a more comprehensive and detailed account of what the team believes community-driven science to be and how they believe it has been achieved up to this point and will continue throughout the project. For only with this information can one evaluate if the claims made by the project team are meeting expectations.

No Time for Lyme!

The project team’s engagement with the Martha’s Vineyard Regional High School was and continues to be a resounding success. The interview participants rated these interactions highly the “No Time for Lyme” student-made pamphlet was highly effective in penetrating the spectrum of community members that took part in the interviews. Volunteer efforts to give presentations to local schools and connect through shared interests, values, and identities is an underappreciated public engagement activity. These types of interactions motivate a new generation of scientists to actively engage in a discussion with the public without dictating how gene editing must be used.91

90 Esvelt, K., & Buchthal, J. (2017). Tick-Borne Disease Research Program Grant Application, Project Abstract. Responsive Science. Retrieved from https://www.responsivescience.org/pub/dod-tick-borne-disease-research-program

91 Nisbet, Matthew. “The Gene-Editing Conversation.” American Scientist106, no. 1 (2018): 15–19. https://doi.org/10.1511/2018.106.1.15.

Figure 8: “No Time for Lyme!” Brochure

Buchthal, Joanna. “No Time for Lyme! · Responsive Science.” Responsive Science, 2018, https://www.responsivescience.org/pub/notimeforlyme.

In the pamphlets produced for this initiative, MAT is described as a community led project and if the MAT approach is “broadly supported by the citizens of Martha’s Vineyard”, the resistant mice could be released on the island. The section in the pamphlet entitled What is meant by Community-Driven Science outlines MAT as a “radical new approach to conducting science in the open” and guided by specific values:

Has clear benefits to citizens

Includes discussions before experiments

Has safeguards that are agreed upon early

Is developed /run as a nonprofit

Has independent monitoring and analysis

Is open and responsive

Will only move forward if embraced by the Community92

To claim its approach as radically new, the MAT team is setting a high bar for itself. As outlined, there are multiple examples in recent history of successful projects designed as community engaged research, evaluation, and implementation. The problem that arises with the claims presented in “No Time for Lyme” is that they require a structural framework that defines the process and outlines the ways that these values will be fulfilled. The activity of “discussion before experiments” would fall into the “Symbolic Participation” category defined by Goodman

92 Buchthal, Joanna. “No Time for Lyme! · Responsive Science.” Responsive Science, 2018, https://www.responsivescience.org/pub/notimeforlyme.

44 et al. (Figure 9). To achieve “Engaged Participation” requires a meaningful dialogue which, in turn, demands more definition by the researchers on the type of discussions, with whom these discussions are targeting, and the frequency of such interactions. “Is open and responsive” is a critically important claim to the success of MAT. It is imperative that the project team defines

“open and responsive” in the context of the MAT experiment. Meeting the expectation of being

“open and responsive” hinges completely on how “open” and “responsive” are defined

(according to the goals and needs of the project). Lastly, “Will only move forward if embraced by the Community” requires defining both the community and what an “embrace” of the project by this community would look like. The MAT team has set a mandate for themselves to follow these guidelines and it’s a disservice to the community and their own research team not to develop a robust definition of all the important elements of their outreach program.

Figure 9: Science of Stakeholder Engagement in Research

Source: Goodman, Melody S., and Vetta L Sanders Thompson. “Science of Stakeholder Engagement in Research: Classification, Implementation, and Evaluation.” OUP Academic. Oxford University Press, April 10, 2017. https://academic.oup.com/tbm/article/7/3/486/4644893.

Commentary and analysis of MAT Community Engagement

Mice Against Ticks should be commended on the quantity of interactions with the community and the variety and type of events used to engage and interact with citizens. It’s also evident that notwithstanding all these events, only a small fraction of the community can be reached.93 Another challenge worth examining is the seasonal nature of the community meeting schedule, as the majority of meetings have been held in the summer months. Naturally, these months will allow for the greatest number of seasonal community members and visitors to attend. The summer months are also usually the busiest months for many year-round residents work in jobs that are either outdoors (building contractors, landscapers) or seasonal in nature

(restaurant staff, seasonal retail). Consequently, holding community meetings in the summer months will almost certainly reduce the opportunity for attendance by many of these year-round residents. One of the interview participants gave credence to this assertion by raising it as a concern during the interview. This is a future consideration that should be granted more consideration by the research team.

The lack of published material available on the RS and MAT websites detailing the CE design, paradigm model, and engagement process that is presently being employed presents a challenge in fully evaluating the CE efforts. It was difficult to evaluate the engagement process per se, including the team’s own definition of engagement, targeted audience, engagement goals,

93 Lunshof, Jeantine. “Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems,” 2019.

46 frequency of engagement, engagement input from community; and the researchers self- evaluation of their engagement efforts. “Through our project we will demonstrate the feasibility of early-stage collaborations between bioethicists and scientists and establish a new model for community engagement in applied ecological research.”94 It was not possible to compare the

MAT model with other existing models because of the lack of published material detailing the new model at this time. It is clear the community meetings that were held showed a high level of interest and the attendance was robust. The participation at these meetings could be described as successful because of the number of participatory episodes during the question and answer sessions. The MAT team has also participated in and enjoyed prolific media write-ups. Could these be described as exercises in engagement or scientific project communiqués? They undeniably serve an important purpose by disseminating details of MAT to the wider publics but would not fully qualify as CE according to the various accepted definitions outlined in the previous chapters.

Lastly, the root of the RS initiative and its application in MAT asks the question: what does it means to govern science according to democratic principles? Essentially, RS is a new kind of direct democracy cultivated by the research team and tested in the MAT project.

Weighing this assertion, the top-down approach of RS is a concern, particularly in the context of this new kind of direct democracy. “Is this project one you may wish to pursue?”95 In some ways MAT may be viewed as a solution looking for a problem— “I was thinking about what would be the ideal place to solve a shared problem with community-driven science. It seemed

94 Esvelt, Kevin, Joanna Buchthal, and Jeantine Lunshof. “Greenwall Foundation Grant Application · Responsive Science.” Responsive Science, October 16, 2017. https://www.responsivescience.org/pub/greenwall-grant-application.

95 Esvelt, Kevin et al. Responsive Science, 2017.

47 that Lyme disease here [Martha’s Vineyard] and on Nantucket…”96 This will be examined in more detail in the following sections.

96 Lunshof, Jeantine. “Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems,” 2019.

Chapter 4

Materials, Methods, Limitations

There are clearly strengths and weaknesses to the chosen approach for this research that are detailed below in addition to the plan to address them. Also, of note are issues that arose, both expected (like scheduling and travel challenges) and unexpected (like reluctance to meet in- person) as well as limitations which to be aware of like sample selection.

I attended my first public meeting July 12, 2018 in the town Vineyard Haven on Martha’s

Vineyard. My time was spent taking notes, introduce myself and this research project to people, and having informal chats with the community before and after the meeting. This allowed me to make connections very early in my research and form a network of contacts to tap for interviews or interview referrals. My research question—1) How is the scientist-community interaction about the proposed ecological intervention perceived by the community members, 2) What did the community expect from 'Responsive Science' and 3) Were those expectations met, automatically defines my target group – the research participants must be community members who could have expectations about Responsive Science, and indicative of that is that they were in some way involved from early on in MAT. Individuals who never heard about the project cannot have expectations and therefore cannot be interviewed about those expectations. The choice of this research strategy allows the researcher to control the interview recruitment and ultimately identifies who will be targeted.

Interviews

When evaluating methods to examine the community’s perceptions of the MAT project’s engagement, I looked to the Eliminate Dengue project in Queensland Australia to understand the ways in which they evaluated their engagement efforts. In this project, Engagement was conducted with a wide range of stakeholders to build a successful trial and “to avoid imposing a technology on the population against its will.”97 The success of the engagement efforts in

Eliminate Dengue were hailed a success but there had been no effective metric to make a measured determination. In their case study, Lavery et al. used in-depth interviews with stakeholders to develop an evidence base for stakeholder engagement and in doing so realized several useful features that comprise a successful engagement program as part of an ecological intervention utilizing genetic engineering.98

For my research, the interview is a particularly good tool for gaining detailed information where the research question is open-ended in terms of the range of possible answers.99 Factors such as island dynamics, local politics, and close-knit communities could make focus-group interviews more challenging. Interviews are not particularly well suited for gaining information from large numbers of people and this fits my research approach. The interviews I conducted were time-consuming in the outreach, scheduling planning and conducting, so careful attention was given to selecting participants who had been involved with MAT in some way. I am exploring people’s “perceptions” and for this research project the best way to do that is via an interview. After deciding to employ the interview method, I chose semi-structured interviews

97 Lavery, James V. “Building an Evidence Base for Stakeholder Engagement.” Science361, no. 6402 (September 2018): 555. https://doi.org/10.1126/science.aat8429.

98 Lavery, “Building an evidence base,” 555.

99 2011-2019, (. C. (n.d.). Writing your Dissertation: Methodology. Retrieved from https://www.skillsyouneed.com/learn/dissertation-methodology.html 50 because the interviewer is free to follow different paths of conversation that emerge over the course of the interview, or to prompt the participant to clarify and expand on certain points.

In semi-structured interviews, the interviewer starts with a list of general introductory questions or topics that they wish to explore. These questions will be used as a starting point for discussion with all the interview subjects, but the format allows for the exploration of interesting areas in more detail. This format is particularly useful in three cases:

1) When interviewees are likely to provide you with interesting data in different areas but

you’re not sure exactly who will provide which information

2) When researcher wants to be able to discuss emerging findings with your interviewees

and test out ideas with them, without being held within a rigid structure

3) When interviewees are nervous about what you might want to discuss, because you can

send the outline of questions to them in advance.

Face-to-face Telephone

Offer the richest data in terms of body Often easier to arrange, and Advantages language and non-verbal communication managers may prefer them as well as what is actually said. because they are less formal

Easier for interviewees to cancel Can be hard to arrange, especially with at short notice. busy people.

Disadvantages Difficult to conduct effectively if It takes time and money to travel to meet you do not already have a interviewees. relationship with the other person. Figure 10: Interviews for Research Source: 2011-2019, (. C. (n.d.). Interviews for Research. Retrieved from https://www.skillsyouneed.com/learn/interviews-for-research.html

Choosing face-to-face, video chat, or telephone interviewing is often a matter of compromise on time, budget, and convenience, in which quality of interaction may suffer.

However, with care it is possible to get very good results from telephone interviewing, especially when you already have a relationship with the interviewee.100

The interviewer is free to follow different paths of conversation that emerge over the course of the interview, or to prompt the informant to clarify and expand on certain points. Therefore, interviews are particularly good tools for gaining detailed information where the research question is open-ended in terms of the range of possible answers. Decisions such as whether to interview, how many participants to interview and so on, “are often based on values and assumptions which influence the study, and as such therefore need to be fully interrogated in order to clarify the research decisions which are made.” 101

Participants

“Informants” is a term derived from anthropology, and this term is used because the investigator is considered naïve and must be instructed about what is going on in a setting, about cultural rules, and so forth. Culture, as a complex phenomenon, must be interpreted for the uninitiated, and the “key informant” is the person who is selected as the primary link between the anthropologist and the cultural group being studied. Informant interviews are of a more in-depth,

100 2011-2019, (. C. (n.d.). Interviews for Research. Retrieved from https://www.skillsyouneed.com/learn/interviews-for-research.html

101 Clough, Peter, and Cathy Nutbrown. A Students Guide to Methodology: Justifying Enquiry. SAGE, 2012, 22.

52 less structured manner (semi-structured, unstructured interviews) with a small selected set of informants most often in a field setting. Participants indicates the most active role the persons who are being studied, and it is term commonly used in qualitative studies. The relationship between the participant and the researcher may be an unequal one or an equal one.102 For my research I will use the term “participants” as it is more suited to the role of the interviewees in this research.

The participants I selected for interviews were community members whom I identified as likely to have expectations about the MAT program. Identification of these individuals from their participations in MAT in some way; for example, as an organizer, as a participant, or as an attendee of one or more MAT meeting or meetings. The initial identification process was conducted by one of the following means—personally meeting a participant at a community event, identification by available documentation and published literature, or referral by individuals. Sample selection is naturally something that needs to be highlighted as

Once I identified a potential participant, I contacted each by sending her or him an email.

Through this email dialogue I determined whether to select the potential participant for an interview. This was based on the following factors: 1) potential participant’s perceived personal comfort level discussing MAT, 2) potential participant’s perceived comfort level with MAT subject matter, 3) potential participant’s availability for a 45-minute interview.

The research goal was to obtain between five to ten interviews. Realistically, I believed five was achievable and ten was possible but would be really challenging. I contacted fourteen community members whom I identified as potential participants. From those fourteen emails I

102 Morse, J. M. (1991). Subjects, Respondents, Informants, and Participants? Qualitative Health Research, 1(4), 403–406. https://doi.org/10.1177/104973239100100401 53 received ten responses and four contacts sent no response. After an email exchange with those ten contacts, I selected seven for a phone interview and I was able to complete an interview with all seven of those selected. One of the participants was a resident of Nantucket and since this research is focused exclusively the island of Martha’s Vineyard, I eliminated that interview from my findings. The interview responses are to remain as anonymous as possible in this type of research setting.

Research Limitations

This research was limited to the twelve-month window permissible under the rules of the

Extension School thesis timelines. The MAT project includes the islands of Nantucket and

Martha’s Vineyard, but this research will focus on Martha’s Vineyard only. In addition to time constraints and resource constraints (that are personal and dictated by thesis guidelines), there are difference in the way engagement by the MAT project team is conducted on Nantucket due to the structure of local government and regulatory bodies, demographics and other nuances between the two islands that would widen the aperture of this research too broadly. The focus of this research was on the island of Martha’s Vineyard and is restricted to only its communities.

Access to the members of those communities was limited due to availability, limitations on my travel to the island, the seasonal nature of the community and their willingness to participate.

Further complicating this research is a small island community as a research setting for a controversial and emotionally charged topic because of the exceedingly high incidence rate of

Lyme Disease in the community. The MAT program has an extended time horizon pertaining to the start and conclusion of the study. I will be limited to studying the program examining

54 retrospectively at events beginning with the initiation of the community outreach in 2016 and ending with the conclusion of my research in October 2019.

My interviews were conducted by phone although this was not my initial plan.

Originally, I had planned to conduct as many interviews as possible in person. During the course of my field work I learned that face-to-face interviews proved challenging for the interviewee and the interviewer. The challenge was a scheduling one, for both parties and part of this was because I would have to travel to the island—something I was prepared to do—but an element of the interview process that I was unexpected was the reluctance on the part of the interviewee to meet in person. The prevalence of this sentiment across my pool of candidates came as a surprise to me and was a revelation that I had not foreseen but also not unprepared for. For these reasons I decided to conduct all my interviews remotely. Six of my interviews were by phone and one was by video chat platform Skype®. Similar to in-person interviews, there was some hesitancy to agree to video chat interviews and thus I made the decision to ask for phone interviews early on. I believe asking for phone interviews made the candidates more comfortable and allowed me to secure more interviews than if I had pushed for video chat.

Interview Questions

The interview questions were created to inspire the participants to think about the RS initiative and MAT in a critical way, allowing a better understanding of the community’s expectations while discovering as a researcher, and perhaps inviting the participants to discover, if and how their expectations were met.

Gender: Age: Occupation: Educational background: Have you or a family member ever had Lyme Disease:

1. When did you first hear about the “Mice Against Ticks” project? (For example, end of 2015, summer of 2016, etc.)

2. How did you first hear about Mice Against Ticks—did someone personally approach you, did you hear about it, or read about it?

3. What do you understand the goal of Mice Against Ticks to be?

4. What is your understanding of the “Responsive Science” aspect of the Mice Against Ticks?

5. What do you understand the goals of Responsive Science to be? a. Are these goals clear to you? b. Do you believe the goals of Responsive Science can be achieved? c. Are these goals important to you?

6. After learning about the Responsive Science approach to this project, what were your expectations? a. Do you believe the Responsive Science approach to be valuable? b. Have your beliefs changed over time?

7. Do you have any expectations for Responsive Science? a. Yes, No, Maybe? b. Do you feel those expectations have been met, partly met, not met at all? c. Do you think the approach of Responsive Science is necessary to achieve the goals of Mice Against Ticks?

8. Have you had direct interactions with the Mice Against Ticks team members?

9. Do you personally feel you have a “say” in the goals of the Mice Against Ticks project?

10. If you were to rate the community interaction, what grade would you give? (A, B, C etc.)

11. Do you have suggestions on how the project team can improve their community engagement?

12. How do you view the interactions between the scientists leading this project and the community?

a. Do you see engagement by the scientists? b. Do you feel they are reaching out to the community? c. Do you feel this outreach is genuine? d. Do you feel they are valuing the community’s feedback and input? e. Do you feel they are including the community’s feedback and input in the project?

13. Do you have any other comments you would like to include?

Chapter 5 Examining Community’s View of Engagement

It’s been established that community engagement has a useful place in research.103 Now we must examine the science of such engagement and ask the important questions—how do we measure the level of engagement and its impact, what are the best practices and how do we evaluate them?104 By examining the community’s perspective on the project team’s engagement efforts we hope to better understand what is working and what isn’t working in the context of

MAT.

Based on the responses, the six interviews were evenly split with half displaying either

“mostly positive” (3) or “mostly negative” (3) reactions. All interview participants had learned of MAT in 2016 so they’ve had approximately 3 years to be involved in some way with MAT community engagement efforts. Of note, one participant did not know what the term

“Responsive Science” means and had never heard of it before I asked the question, as far as they could recall. The other participants had some understanding or idea and could communicate pieces of the RS values and goals.

Participants took diametric positions on whether they had a “say” as a community member in the MAT project. This could be due to the uneven schedule of community meetings and a flurry of activity, usually in the summer months, followed by long periods of silence. Even

103 Hauck, J., et al. Stakeholder Analysis in Ecosystem Service Decision-Making and Research. 2016.

104 Goodman, Melody S., and Vetta L Sanders Thompson. “Science of Stakeholder Engagement in Research: Classification, Implementation, and Evaluation.” OUP Academic, Oxford University Press, 10 Apr. 2017, https://academic.oup.com/tbm/article/7/3/486/4644893.

58 participants who were in the “mostly positive” category had repeatedly expressed being perplexed by the research’s teams prolonged silence for the last year. It is possible to say that interest in the research by the community, and effort by the researchers, will wane without clear goals, assignment of responsibility and periodic communication.105 Furthermore, discontinuous involvement, usually because of improper planning, will assuredly lead to involvement fatigue with the community.106 This should be an area of focus for the MAT team.

There were eight themes that emerged from the interviews (Figure 11). The most prevalent themes were in the area of communication and more specifically criticizing the lack of understanding about the communication strategy, extended cycles with no communication, and an expectation of a more robust plan and execution in this area. Based on this, the MAT team should focus heavily on developing a robust communication strategy and a plan to put the strategy into practice. The long periods of time with no meetings, press releases in the local newspapers, or other communication was an area of frustration for the participants. Moreover, it seems there would some tolerance for the lack of communication if the participants knew about the plan to communicate—for instance if a meeting schedule was already in place and they know about it. Alternatively, if the project team made it known that the focus had shifted to the lab and the community portion of the project is on hold. Regular updates to communicate that “we have nothing to communicate at this time” would be helpful for the community to know that they are still a priority and there is an effort to engage even if there isn’t much progress to showcase.

105 Goodman, Melody S., and Vetta L Sanders Thompson. “Science of Stakeholder Engagement in Research: Classification, Implementation, and Evaluation.” OUP Academic, Oxford University Press, 10 Apr. 2017, https://academic.oup.com/tbm/article/7/3/486/4644893.

106 Hauck, J., et al. Stakeholder Analysis in Ecosystem Service Decision-Making and Research. 2016.

Themes from interviews

Themes Number of Statements RS seems like a “great idea” or “impressive” 6

Praise for project with High School students— 4 No Time for Lyme

No understanding about the communication 20 structure, schedule, frequency or strategy.

Connecting RS as a concept or guiding 7 principle to MAT was a problem.

RS and MAT were seen as mutually 6 inclusive—without RS, MAT wouldn’t be possible.

MAT team has gone silent for a long time, 18 most participants cite a year since they heard anything about MAT.

Participants “expect more” from MAT 18 regarding communication

Participants “Going on trust” when it comes to 6 what the MAT project team are doing or what the next steps are

Figure 11: Interview Themes

The participants were asked to grade the “community interaction” by the MAT research team. I thought it would set a lower bar to ask specifically about “interaction” whereas engagement could be, and rightfully so, seen as more nuanced and complicated. I feel the engagement can be fully evaluated taking all the questions and participant input as a whole.

With that in mind, the grades were still split with half mostly positive—A, B+ and B and half mostly negative—D, D- and no grade.

Grades D

B+ “Last panel they did a great job, stayed late to answer questions.”

“Number of serious efforts of engagement and that nice to see.”

B “Solid B, there are always things they could do better. They could always have a weekly update or do things better, but they’ve done a great job.”

D-

A “Bent over backward to embrace community.”

Understanding the Goals of Responsive Science

Maybe Are these goals NO clear to you?

e YES p Do you believe the goals y T

Maybe of Responsive Science

s NO can be acheived? n

o YES p s

e Are these goals Maybe R important to you? NO YES

0 2 4 6 Number of Responses

Graph 1: Understanding the Goals of Responsive Science

Participants had a strong understanding of the overarching goals of MAT with varying degrees of technical comprehension. The goals of Responsive Science were not as fully understood. Only two participants felt the goals were clear to them, three felt they were not clear, and one wasn’t sure. The few who did have a clearer grasp of RS still expressed disappointment with the lack of communication to the community about RS and the way it had been implemented with Participant 6 noting they were “underwhelmed by what they are describing as Responsive Science.”

Answers to the question “What is RS?”:

o “Transparency and to equip the public with knowledge”

o “Community has a say”

o “Totally transparent and community gets input”

o “Commitment to engage with the communities”

o “Transparent and inclusive”

o “Thought this is where the funding is coming from”

The answers above provide a useful insight to the communities understanding of RS. Five of the six participants were able to display a clear or partial understanding of the two guiding pillars of RS. This wasn’t reflected in their understanding of the goals of RS below.

Answers to the questions “What are goals of RS?”:

o “Gain support of the community but not experiencing the concept at this point”

o “Ideas are presented to the public”

o “Bring Hippocratic oath to science”

o “Science is responsible to the people’s needs”

o “Hasn’t been made clear to me” and “generalized and vague”

o “I’m not sure about that”

RS as a novel new way to conduct science and change the way science, particularly new and possibly controversial technologies are deployed was not fully understood by the participants. It is not fair to expect everyone to comprehend and remember that cutting edge technology like gene drives for use in applied ecological research is a focus for RS. That much can be conceded.

The more important point illuminated through these interview questions is that the participants are not aware that in addition to the MAT experiment, there is a second experiment being conducted that is embedded in MAT, and that experiment is testing the principles of RS as a new model for scientific democratic decision-making.

Assessment of Community's Expectations Post Responsive Science Engagement

Do you believe the NO Responsive

e Science approach p y YES to be valuable? T

e s n o

p Have your beliefs s NO e changed? R YES

0 2 4 6 Number of Responses

Graph 2: Assessment of Community’s Expectations Post Responsive Science Engagement

Understanding Participants Expectations for Responsive Science

Maybe Do you have any NO expectations for

e YES Responsive Science? p y T

Do you feel those

Maybe

e expectations have been s NO

n met? o YES p s e Do you think the approach of R Maybe Reponsive Science is necessary NO to acheive the goals of the YES MAT project?

0 1 2 3 4 5 Number of Responses

Graph 3: Understanding Participants Expectations for Responsive Science

It is difficult for participants to place value on RS when there is not full understanding of the goals of RS. Claims made in Responsive Science can undermine the very openness that it promotes. The double-edged sword is when expectations are raised and then not delivered and when openness ends up being only partial or selective.107 This appears as an area of potential concern in MAT as evidenced by the interview responses. As shown above, three of the six participants feeling their expectations for RS have not been met. Research on citizen participation in democratic policymaking has shown that this type of disconnect is off-putting for participants, particularly those who may have joined with high expectations and then are disappointed, sometimes enough to not participate in the future.108

107 Lunshof, Jeantine. Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems. 2019.

108 Michels, Ank, and Laurens De Graaf. “Examining Citizen Participation: Local Participatory Policymaking and Democracy Revisited.” Local Government Studies, vol. 43, no. 6, 2017, pp. 875–881., doi:10.1080/03003930.2017.1365712.

How Participants View the Interactions Between the Scientists Leading this Project and the Community

Do you see engagement by the Maybe scientists? NO YES Do you feel they are reaching

e Maybe out to the community? p NO

y YES T

Maybe Do you feel this outreach is e

s NO genuine?

n YES

o Do you feel they value the

p Maybe community's feedback and s

e NO input?

R YES Do you feel they include the Maybe comminty's feedback and NO input in the project? YES 0 1 2 3 4 Number of Responses

Graph 4: How Participants View the Interactions Between the Scientists Leading this Project and the Community

The responses to the engagement efforts by the research team with the community are strongly positive. The concern we see, is that some participants feel the feedback they provide isn’t adequately valued and isn’t included in MAT. By design, the island steering committee functions to fill the communication gap between the community and researchers. Therefore, how is the steering committee acting to bridge the divide between community and researchers?

“Each Steering Committee includes local citizens, doctors, researchers, and vocal skeptic of the project, whose job is to share the concerns and insights of people who might not otherwise speak up.”109 Is the Martha’s Vineyard steering committee aware that they are responsible for

109 Esvelt, Kevin. “Could Daisy Drive Help Make New Zealand Predator-Free? · Responsive Science.” Responsive Science, 2017. http://www.responsivescience.org/pub/daisydrivenz.

65 soliciting and conveying the communities concerns? Is the community aware that the steering committees are in place to serve this critical function? Are the committees designed to meet this obligation as a voice of the people? Are the steering committees connected to the community in such a way that allows the harvesting and conveying of these concerns to the MAT research team? From my interviews, it did not come across that the participants were aware they could go to the steering committees with their feedback. This is a finding that presented itself during this research and wasn’t something the interview questions were intentionally designed to explore.

This is an area worth investigating by the MAT team.

MAT Team and Community Interaction

NO Have you had any

e interactions with the p

y YES MAT team members? T

e s n

o Do you feel you have p

s NO e a say in the goals of R the MAT project? YES

0 2 4 6 8 Number of Responses

Graph 5: MAT Team and Community Interaction

To revisit, the two pillars of engagement for Mice Against Ticks, as laid out by the project team in Responsive Science, are research that is 1) transparent and 2) community guided.

These two pillars are interdependent since transparency requires sharing of information and

66 community guided research cannot be realized without full disclosure by the research team.110 If the community feels that the project team is not fulfilling their duty under Responsive Science to stay fully engaged through—through meetings or correspondence or various means of communicating—then the community guidance aspect of MAT cannot be fully realized. A rethinking of future meetings’ style and structure, possibly to include smaller more focused meetings, could prove impactful. Participant 6 asked “why the meetings are so big and formal and infrequent?” and Participant 2 recommended “there needs to be more people here more often, they need people involved with the community, they can’t just show up in the summer and then disappear.” These comments reflect a meeting schedule concentrated mostly in the summer meetings utilizing a similar large town hall style with panels and experts.

110 Lunshof, Jeantine. Final Report - Part I Bioethics - A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems. 2019.

Chapter 6

Conclusions

The long-term goal for RS (and more specifically MAT) is that the science be done entirely in the open; proposals are made public, and the scientists design a way for communities to weigh-in and make decisions very early in the proposed process.111 From what we see the design for the MAT community engagement is a work in progress and it’s been challenging to realize the vision of open dialogue and community input. The argument has been made that the entire system of engagement and responsiveness is a process, not an outcome. “The difference with Responsive Science, I argue, is that it is a method of generating answers to the question of how to govern democratically, rather that the answer themselves.”112 To this end, the community engagement component of MAT is a process that continues, and will continue, insofar the community is engaged and provides input to respond to. But this approach doesn’t help to improve the immediate existing communication gaps and the overall engagement efforts of MAT. The research tells us that implementors of community engagement approaches often rely on trial and error and thus putting success at risk.113 This leads to the following questions:

o Why is outreach conducted in this way?

111 Goldberg, Carey. “A Futuristic Proposal On Martha's Vineyard: Modify Mouse Genes To Fight Lyme.” Wbur, July 20, 2016. https://www.wbur.org.

112 Evans, Sam Weiss. “What Is Responsive Science: Sam's Perspective · Responsive Science.” Responsive Science, 2017. https://www.responsivescience.org/pub/what-is-responsivescience-sams-perspective.

113 Boaz, Annette, et al. “How to Engage Stakeholders in Research: Design Principles to Support Improvement.” Health Research Policy and Systems, vol. 16, no. 1, Nov. 2018, doi:10.1186/s12961-018-0337-6.

o How was this approach established?

o How is success defined by the researchers?

o How is success defined by the community?

Furthermore, it should be noted that meetings in public do not comprise a “community guided” approach, although this is mostly what we have to point to show “community guided.” As

Lavery notes, engaging communities are motivated disproportionately by the interests and goals of the scientific programs and less by the need to serve the community and their needs.114 To disprove this, it’s essential that MAT clearly defines its approach to CE, including parameters within which to conduct their work.

Ways to Improve Community Engagement in MAT

The Mice Against Ticks team needs to equip the community with technological tools that allow multi-dimensional sharing across all parties. The goal is to free, facilitate, and formalize sharing of information.

o Create an efficient way for scientists to actively share research progress, delays,

successes or setbacks with the community.

o Create an efficient way for the community to immediately communicate and share ideas,

questions, suggestions with the scientists.

o Create an online forum or venue for the publics, stakeholders and community to share

with each other and comment on the research.

114 Lavery, James V. “Building an Evidence Base for Stakeholder Engagement.” Science, vol. 361, no. 6402, Sept. 2018, pp. 554., doi:10.1126/science.aat8429.

To put it succinctly—improve electronic communication tools, improve the communication plan, promote sharing of ideas across all parties.

As Goodman et al. note in their research on the science of stakeholder engagement, it is unlikely that any deficiencies in the process for the teams they evaluated are much different than those observed in other stakeholder-engaged research, but this is type of information is precisely what should be documented and shared to advance the development of the science of stakeholder engagement.115

It is commendable that the research team has embarked on a mission to change the way emerging technologies are developed and deployed through engaging with local communities and likeminded scientists. However, efforts toward the development of processes for continued communication, decision-making, shared vision, change management, and implementation are required, as these are the central elements of an engaged process.116 It’s important to point out that developing these processes for community engagement in MAT are building blocks that are presently missing.

A Second Experiment in Direct Scientific Democracy

The second experiment in addition to Mice Against Ticks is an experiment with a new kind of governance relationship with the communities that are being engaged. This is aims to be

115 Goodman, Melody S., and Vetta L Sanders Thompson. “Science of Stakeholder Engagement in Research: Classification, Implementation, and Evaluation.” OUP Academic. Oxford University Press, April 10, 2017. https://academic.oup.com/tbm/article/7/3/486/4644893.

116 Goodman, Melody S., and Vetta L Sanders Thompson. “Science of Stakeholder Engagement in Research: Classification, Implementation, and Evaluation.” OUP Academic. Oxford University Press, April 10, 2017. https://academic.oup.com/tbm/article/7/3/486/4644893.

70 a new model of direct democracy in scientific research and this has not adequately been conveyed to the Martha’s Vineyard community. From the project team: “Here, we describe

Mice Against ticks as an experimental effort to iteratively engage members of the community in an effort to solve a public health problem by using CRISPR to edit wild animals that serves as reservoirs of disease.”117

These models typically spring from bottom up and not top down which creates questions on the very nature of whose project this is. The top down character of a research team coming to

Martha’s Vineyard lends itself to many areas of concern regarding public participation and who is being engaged. The community that is presently being engaged could possibly be a narrower and less inclusive group than one that truly represents the island. Research suggests that public participation in scientific research of this kind is largely well-educated, middle to upper class, older in age and almost entirely white.118 This lack of diversity requires more attention from researchers involved in community engagement efforts and democratic innovations.119

The experiment in democratic procedures wasn’t made clear and the model of innovative democratic participation wasn’t seen by participants. An exercise in engagement has two vital components—participants are comfortable with and aware to the reality that they are a model

117 Buchthal, Joanna, et al. “Mice Against Ticks: an Experimental Community-Guided Effort to Prevent Tick-Borne Disease by Altering the Shared Environment.” Philosophical Transactions of the Royal Society B: Biological Sciences, vol. 374, no. 1772, 2019, p. 6., doi:10.1098/rstb.2018.0105.

118 “Data Brief: Citizen Science Papers Have More Impact.” Data Brief: Citizen Science Papers Have More Impact, Nature INDEX, 23 Nov. 2018, https://www.natureindex.com/news- blog/data-brief-citizen-science-papers-have-more-impact. Accessed 2 Sept. 2019.

119 Michels, Ank, and Laurens De Graaf. “Examining Citizen Participation: Local Participatory Policymaking and Democracy Revisited.” Local Government Studies, vol. 43, no. 6, 2017, pp. 875–881., doi:10.1080/03003930.2017.1365712.

71 organism in deliberative democracy, and they are also required to provide input on the experiment in which they are participants. Since there are two experiments being conducted simultaneously—a deliberative democratic experiment and a scientific experiment—there is a binary claim being made that the research team is also reforming the democratic scientific process. This new responsive public participation aims to craft a new way of going out to public for input and consent. The use of this new form of governance versus the functioning democracy that is the currently installed leads us back to the question of representation. How do we know that everyone will be included and if the right collection and distribution of stakeholders are involved in this project?

To correct some the deficiencies highlighted above, the researchers are required to clearly communicate the goals of Responsive Science to the community imparting that:

o RS is an endeavor to develop new model for direct democracy in science

o RS is a forum to brainstorm and exchange new ideas on direct democracy in science

o RS is an experiment with new approaches in community engagement

o RS will be developing ways to define and test this new model’s effectiveness

To correct some of the gaps we see in delivering on the promises of RS, the researchers could implement the following operational and management principles a) clear and coherent set of guiding principles and ethical commitments to the community, b) an explicit management strategy integrating program management, ethical commitments and community interests and c) the highest degree of transparency possible.120

120 Lavery, James V. “Building an Evidence Base for Stakeholder Engagement.” Science, vol. 361, no. 6402, Sept. 2018, pp. 554–556., doi:10.1126/science.aat8429.

Functional ways to improve Responsive Science for the researchers and community:

o Define who will benefit from the project

o Define the appropriate communities to engage

o Processes should be developed and utilized to assure CE sustainability and progress

o Define how to evaluate the quality and quantity of CE

The MAT team has not been successful in getting across that there are two experiments being conducted. In the first, the MAT engagement has some important successes to point to— the high school project No Time for Lyme being an impressive success—and in the second, the

RS experiment is not showing the same level of success. The main reason the RS community model as a democratic model has not been as successful is that the community members have not been aware of it. To change this, the MAT team could refocus on the plateau of informing people, communicating what this second experiment is about and why they are conducting it.

When they accomplish this, it may be greeted with the same level of enthusiasm as the high school exercise.

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