National Academies Press: OpenBook
« Previous: 4 Oversight and Governance
Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×

5

Public Engagement

Public engagement can be defined in various ways, adopt various formats, and have various goals (NASEM, 2017a).1 Some activities are designed as one-way communication from researchers to the public, while others are designed as “conversations that support two-way learning” (Staley and Barron, 2019) or “dialogues of science, ethics and religion.”2 The formats include, among others, focus groups, testimony at hearings, community advisory groups, and consultations. Goals include educating the public, informing the public about research studies, disseminating research findings, seeking advice, providing input for policy making, increasing research participation, establishing dialogue, and increasing trust. Robust public engagement is important when sensitive new biotechnologies emerge and even more important when research on these technologies is publicly funded. Implementing public engagement presents challenges, including how to select individuals and groups to participate, how to help participants understand the scientific issues and existing regulations and oversight, and how to respond to controversy or public opposition.

PUBLIC ENGAGEMENT INTERNATIONALLY AND IN THE UNITED STATES

Other countries have national procedures and institutions in place to facilitate public engagement. The United Kingdom has Sciencewise,3 a semi-independent

___________________

1 See https://www.aaas.org/programs/dialogue-science-ethics-and-religion.

2 Dietram Scheufele, University of Wisconsin–Madison, presentation to committee, October 29, 2020, virtual meeting. PNAS paper, in press.

3 See Scheufele et al., 2021.

Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×

government agency intended to facilitate such public engagement, including through polling, deliberative dialog, and written consultations.4 The United Kingdom has also used “citizen assemblies” to discuss complex issues such as climate change.5 The UK Academy of Medical Sciences conducted a public consultation in the process of producing its 2011 report Animals Containing Human Materials (Academy of Medical Sciences, 2011); however, the process and the summary of its findings have been criticized (Baylis, 2009). Denmark has “a longstanding tradition of consensus conferences for which broad representation is sought, and whose results are taken seriously in the policy-making process” (NASEM, 2017a). This process is coordinated by a government agency, the Danish Board of Technology. The United States currently lacks effective mechanisms to facilitate or carry out public engagement at the national level. At the local level, a prominent genetics researcher has established a project designed to inform diverse communities about genomics through workshops in schools, faith communities, libraries, museums, youth groups, and community spaces (Marcus, 2018).

The void in public engagement in the United States has been noted, and several National Academies’ reports and activities have called for greater public engagement with emerging innovative areas of biotechnology and biomedical research. For example, the 2017 National Academies report on human genome editing (NASEM, 2017a) calls for public engagement, participation, and input in policy development, particularly before approval of research that includes genome edits that are heritable or go beyond prevention or treatment of disease. Statements from the organizing committees for two International Summits on Human Genome Editing organized by the National Academies also call for such engagement (NASEM, 2015, 2019b). The 2016 report Gene Drives on the Horizon includes extensive guidance and recommendations on stakeholder engagement (NASEM, 2016a). Other reports call for public engagement on other biotechnologies, including those focused on mitochondrial replacement techniques (NASEM, 2016c), genetically engineered crops (NASEM, 2016b), and novel biotechnology products (NASEM, 2017b, 2019a) to help inform future directions. However, these recommendations for public engagement have not been broadly implemented. The committee notes that in the United States, regardless of public attitudes and values, there are other considerations in play in setting policy, including constitutional limitations on what government can do to abridge freedoms.

Public engagement strategies must be based on the realization that many people base their reactions to biotechnological innovations, including human neural organoid, transplant, and chimera research, on core beliefs and values that commonly are grounded in their religious beliefs. In the United States, there are a wide range of religious perspectives and multiple views within any faith tradi-

___________________

4 Robin Lovell-Badge, Francis Crick Institute, presentation to committee, November 13, 2020, virtual meeting.

5 See https://www.climateassembly.uk.

Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×

tion. At the same time, many people base their core beliefs on secular values, which also are diverse. The committee found that engaging in discussions with experts in medicine, biology, philosophy, law, theology, religious studies, and other disciplines was very useful. Based on its experience, the committee believes that such discussions can be mutually enlightening and might be even more so if they were sustained over multiple meetings or over an extended period of time.

Because of the plurality of religious and secular views in the United States concerning biotechnological innovations, respectful dialogues between religious and secular perspectives and among different viewpoints could help build mutual understanding. Even if individuals from different disciplines, communities, and faith traditions do not reach agreement on specific policies, it is useful for each group to feel that they have been listened to and understood by others. For example, speakers from disciplines other than science who addressed the committee were interested in learning about the research discussed in the report. Such discussions might also build an appreciation of why other people hold different views, find common ground, and forge connections and trust.

There are many unresolved questions about how respectful dialogues and discussions might be carried out: What should be the goals? Who should convene them? What format should be used? Is it useful to have people meet over an extended period of time or in several sessions? Under what circumstances would it be desirable to hold them locally, regionally, or nationally? The answers to these questions will likely vary on the basis of topic and the purpose of the discussions. It will be useful to learn from various types of public engagement that have been carried out on various topics—What were the strengths, weaknesses, and lessons learned?

POTENTIAL CONTRIBUTION OF SOCIAL SCIENCE RESEARCH

In addition to public engagement, social science research, ultimately building to a representative sample of the U.S. population, could identify public attitudes regarding human neural organoids, transplants, and chimeras and contribute to oversight policy. Unfortunately, the committee was unable to find documentation of research specific to these topics. There have been empirical studies of public attitudes regarding nonneural chimeras, such as pigs with organs compatible with humans that could be transplanted to humans, although these studies were not done with a representative sample of the U.S. population.

A population-based U.S. survey on genetic engineering, a topic that also raises public concerns, found that “most Americans accept genetic engineering of animals that benefits human health, but many oppose other uses” (Funk and Hefferon, 2018). When asked about producing “animals to grow organs/tissues for humans needing a transplant,” 41 percent said that this would be “taking technology too far,” and 57 percent said it would be an “appropriate use of technology.” This study also found that 52 percent of Americans opposed the

Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×

use of animals in research; more people were opposed to chimeric than to other animals (69 percent vs. 47 percent). It is possible that there would be still more opposition to neural chimeras generated for purposes other than organ or tissue donation, which was the topic of this survey. Surveys addressing this issue could help inform public policy.

It is also important to know why groups in the public support or oppose particular types of research, information that can be used to determine whether technology can proceed in ways that support the values of the public. In the survey of genetic engineering, a qualitative follow-up question explored objections to chimeric animals for organ transplantation. A range of objections was elicited: 21 percent of objections were coded as focused on animal suffering, 11 percent on “messing with God’s plan,” 6 percent on “messing with nature,” 16 percent on human health, and 9 percent on unintended consequences in general, with smaller percentages focused on other concerns. Well-designed research on the public’s attitudes toward human neural organoids, transplants, and chimeras, as well as on why they hold those attitudes and which groups have specific reasons, would help inform policies regarding this research. As discussed in Chapter 3, ethical implications are sometimes associated with a “yuck” factor, which can be difficult for individuals to delineate logically. Even so, such feelings can erode trust in the scientific process if they are not identified and addressed in engagement and discussion.

NOMENCLATURE

When conducting any type of public engagement, it is important to choose nomenclature carefully. Kathleen Hall Jamieson, a professor of communication, discussed with the committee the implications of terms used to describe innovative biotechnology. Jamieson said that all can agree on the importance of scientific accuracy. She also cautioned that some terms may induce listeners to bring to bear concerns and associations from other, unrelated debates. She advised that words used to describe new research should not lead listeners to draw false inferences or attempt to persuade them that the innovative science is desirable. Instead, Jamieson suggested that a good term should induce the listener to want to learn more about the science.6

In this report, therefore, the committee uses the terms “neural organoid,” “neural transplant,” and “neural chimera” not only because they are scientifically accurate and widely used to denote these research models but also because they do not represent an attempt to lead the reader to a conclusion and are not connected to unrelated ethical debates. Likewise, the committee eschewed such terms as “mini-brain” because they are scientifically inaccurate and may also

___________________

6 Kathleen Hall Jamieson, University of Pennsylvania’s Annenberg School for Communication, presentation to the committee, July 15, 2020, virtual meeting.

Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×

lead members of the public to perceive that ethical boundaries have been crossed when in reality they have not. Such terms as “humanized” were also avoided because in this case, the term implies that a nonhuman animal could or has become human, thus invoking a stance in the ethical debate about what it means to be human. The term “chimera” is used because it is scientifically accurate, and the committee believes that its connection with the monsters of ancient myths is too remote to warrant avoiding its use. Research scientists and their institutional representatives can be cautioned to avoid terminology that may court attention but does their work a disservice by stimulating concerns that go far beyond the current state of the science.

Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×

This page intentionally left blank.

Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×
Page 91
Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×
Page 92
Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×
Page 93
Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×
Page 94
Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×
Page 95
Suggested Citation:"5 Public Engagement." National Academies of Sciences, Engineering, and Medicine. 2021. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/26078.
×
Page 96
Next: 6 Findings of the Committee »
The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance Get This Book
×
Buy Paperback | $40.00
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

Each year, tens of millions of individuals in the U.S. suffer from neurological and psychiatric disorders including neurodegenerative diseases such as Alzheimer's Disease and Parkinson's Disease, and psychiatric disorders such as autism spectrum disorder, depression and schizophrenia. Treatments for these diseases are often completely lacking or only partially effective, due in large part to the difficulty of conducting brain research and the complexity of the brain itself.

Researchers in recent years have developed new models to better represent and study the human brain. The three models considered in this report, all of which generate and use pluripotent stem cells from healthy individuals and patients, are human neural organoids, human neural transplants, and human-animal neural chimeras. The Emerging Field of Human Neural Organoids, Transplants, and Chimeras: Science, Ethics, and Governance reviews the status of research, considers its benefits and risks, discusses associated ethical issues, and considers governance mechanisms for this type of research.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!