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. 2023 Feb 2;18(2):420–426. doi: 10.1016/j.stemcr.2023.01.002

Critical considerations for public engagement in stem cell-related research

Jeremy Sugarman 1,∗, Amander Clark 2, James Fishkin 3, Kazuto Kato 4, Kevin McCormack 5,10, Megan Munsie 6, Michael J Peluso 7, Nancy René 8, Susan L Solomon 9,10
PMCID: PMC10242349  PMID: 36736324

Summary

Public engagement is increasingly recognized as being integral to basic and translational research. Public engagement involves effective communication about research along with the mutual exchange of views and opinions among a wide variety of members in society. As such, public engagement can help to identify issues that must be addressed in order for research to be ethically sound and trustworthy. It is especially critical in research that potentially raises ethical concerns, for example research involving embryos, germline genome editing, stigmatized conditions, and marginalized communities. Therefore, it is not surprising that there have been prominent recent calls for public engagement in the emerging sciences. However, given that there is arguably little agreement about how this should be done and the best ways of doing so, those involved with planning and implementing public engagement can benefit from understanding a broad range of prior experiences on related issues.

Highlights

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    Public engagement is integral to basic and translational research

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    Public engagement involves the mutual exchange of views and opinions

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    Public engagement helps research to be ethically sound and trustworthy

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    Those involved public engagement can benefit from prior related experiences

In this meeting report, Sugarman and colleagues describe the need for public engagement to help ensure that research is ethically sound and trustworthy. Public engagement is especially needed regarding research involving embryos, germline genome editing, stigmatized conditions, and marginalized communities. Those involved with public engagement can benefit from understanding a broad range of prior experiences on related issues.

Introduction

Public engagement is increasingly recognized as being integral to basic and translational research (Stilgo et al., 2014). It is especially critical in research that potentially raises ethical concerns, for example research involving embryos, germline genome editing, stigmatized conditions, and marginalized communities. Public engagement involves effective communication about research along with the mutual exchange of views and opinions among a wide variety of members in society. As such, public engagement can help to identify issues that must be addressed in order for research to be ethically sound and trustworthy. In addition, public engagement can help promote the appropriate implementation of research. While there have been prominent recent calls for public engagement in the emerging sciences, there is arguably little agreement about how this should be done and the best ways of doing so. However, standards for doing so have been articulated in other areas of science, especially human immunodeficiency virus (HIV)-related research, that may provide an example for high-stakes scientific research. A focus session held during the International Society of Stem Cell Research’s (ISSCR) 2022 Annual Meeting on June 15, 2022, included panelists who described some of the recent calls for public engagement in the emerging sciences as well those who have experience with public engagement in a variety of settings (Table 1). This meeting report summarizes the presentations and discussion in the hope of identifying ways to think about what meaningful public engagement might involve in the context of emerging science.

Table 1.

Session overview

Welcome, Introductions and Overview Jeremy Sugarman, MD, MPH, MA, Johns Hopkins University, USA
Calls for Public Engagement in the ISSCR 2021 Guidelines Amander Clark, PhD, University of California, Los Angeles, USA
International Calls for Public Engagement Regarding Human Genome Editing Kazuto Kato, PhD, Osaka University, Japan
Engagement in Cutting Edge Translation: HIV Cure Research Michael Peluso, MD MPhil, University of California, San Francisco, USA
Embryo Research Robin Lovell-Badge, PhD, The Francis Crick Institute, UK
Stem Cells: Premature Use Megan Munsie, PhD, Murdoch Children’s Research Institute and University of Melbourne, Australia
Stem Cells: Public Outreach Kevin McCormack, California Institute for Regenerative Medicine, USA
Stem Cells: Advocacy Simi Ahmed, PhD, New York Stem Cell Foundation, USA
Stem Cells: Patient/Family Perspective Nancy René, Independent Patient Advocate, USA
Goals, Principles and Modalities of Public Engagement in Science James Fishkin, PhD, Stanford University, USA
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Selected recent calls for public engagement in research

Advances in science and technology have been associated with complex ethical issues that are being considered by a variety of international groups. A common recommendation of these groups, regardless of the particular research being addressed, is a call for public engagement to inform further deliberations. Of particular relevance to the stem cell field are appeals for greater public engagement with respect to limits on human embryo-related research, human genome editing, and HIV-related research.

Human embryo-related research

The ISSCR developed and periodically updates “Guidelines for the Conduct of Human Stem Cell Research and Clinical Translation.” These guidelines are designed to “articulate ethical principles and rules of behavior for the performance of human stem cell research” (https://www.isscr.org/policy/guidelines-for-stem-cell-research-and-clinical-translation/guidelines-archive), with a major goal of conveying the responsibility of scientists to adhere to rigorous standards of research and ethics around the world employing a common framework for oversight, review, transparency, and scientific publishing.

Among many provisions, the 2021 updated guidelines recommend public engagement on the “14-day rule” (Clark et al., 2021). The 14-day rule was established over 40 years ago and pertains to the laboratory culture of human embryos for up to 14 days after fertilization or the formation of the primitive streak, whichever comes first. This widely adopted rule balances moral concerns about the embryo with the desire to pursue research with embryos for a variety of purposes. However, revisiting this rule is important because it is now theoretically possible to culture human embryos for longer than 14 days due to recent successes in nonhuman primates (Matthews et al., 2021). Furthermore, with new stem cell-based embryo models, it is now possible to recapitulate many three-dimensional aspects of early human embryo development using stem cells, including the formation of blastocyst-like structures as well as models that recapitulate formation of primitive streak-like cells. Scientific findings from cultured human embryos and stem cell-based embryo models have the potential to generate fundamental knowledge on the biology of the placenta and extra embryonic membranes, as well as neural, brain, and spinal development, cardiovascular development, and the cellular basis of human organogenesis during the earliest steps following embryo implantation to establish a pregnancy. These findings are also expected to contribute to the understanding of the early molecular and cellular events associated with diseases that manifest later in life. Thus, the goal of culturing embryos for longer than 14 days is to acquire fundamental knowledge that could have a broader impact on human health.

Human genome editing

The availability of new tools such as CRISPR-Cas9 that enable modification of genomes with ease and high efficiency has led to intense global debate about the ethics and governance of these technologies. Some, but certainly not all, research and clinical applications using genome editing involve complex ethical issues (e.g., heritable human genome editing). Addressing these issues properly necessitates broad societal engagement as articulated by scholars (Hurlbut et al., 2015) and the Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations convened by the National Academies in the US (National Academies of Sciences, Engineering, and Medicine et al., 2017).

Subsequently, and following a series of engagement activities that were part of its work, the WHO Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing described the need to expand global public engagement activities about human genome editing in its two 2021 reports (https://www.who.int/publications/i/item/9789240030060; https://www.who.int/publications/i/item/9789240030381). Both reports emphasize ethical values and principles such as inclusiveness, fairness, solidarity, and global health justice. To implement these values and principles, the committee recommended “education, engagement and empowerment.” Specifically, “WHO should develop models of best practices of inclusive multinational, multi-stakeholder dialogue, and supporting materials, that can be applied to human genome editing” (https://www.who.int/publications/i/item/9789240030381). A current challenge for stakeholders around the world is how actual public engagement can and should be conducted at the national, regional, and global level.

HIV-related research

Engagement with community stakeholders has long been critical for HIV-related research, where community advocates and activists have shaped the HIV scientific agenda and the implementation of research since the early days of the HIV pandemic. A series of guidelines and policies regarding community engagement in HIV-related research followed the articulation of the “Denver Principles” in 1983 (https://www.hivcaucus.org/denver-principles). These are exemplified in the Good Participatory Practice Guidelines that were developed through a collaboration of the AIDS Vaccine Advocacy Coalition and WHO/UNAIDS (https://www.avac.org/good-participatory-practice). More recently, the International AIDS Society announced its Global Scientific Strategy 2021 for HIV Cure Research (described below), which identified areas for engagement that remain suboptimal, particularly broad representation from community groups (including race, ethnicity, age, gender, sexuality, and geography) and a focus on engagement of groups underrepresented in HIV cure research, such as cisgender women (Deeks et al., 2021).

Lessons from past experiences with public engagement

Faced with the prospect of public engagement regarding emerging stem cell-related research, it is beneficial to review relevant experiences with engagement in research such as that related to embryos, human embryonic stem cells (hESCs), HIV cure, and the premature clinical use of stem cell-based interventions.

Embryo research

Establishing the 14-day rule for culturing human embryos involved substantial public engagement in the US and UK. In the US, it was led by an Ethics Advisory Board convened in 1977 by Secretary Joseph Califano, Department of Health Education and Welfare (now the Department of Health and Human Services), and chaired by James Gaither. In the UK, it was directed by a committee convened in 1982, and chaired by Mary Warnock; the findings from the 1984 Warnock Report were used as the basis to create the Human Fertilisation and Embryology Act (HFEA). In both cases, the committees sought and received hundreds of opinions, both written and oral, from members of the general public (Matthews et al., 2021). Significant public engagement resulting in what seems to constitute a widely accepted approach was likely due at least in part to the media attention focused on the first pregnancies and successful birth outcomes of in vitro fertilization-conceived embryos.

Years later, a variety of public engagement activities regarding mitochondrial replacement therapy (MRT) were undertaken in the UK even before the science was ready, leveraging the HFEA to allow clinical applications of MRT (Castro 2016). This exemplifies the value of early, dedicated engagement efforts when potentially controversial biotechnological breakthroughs are imminent.

Early hESC research

Lessons around advocacy and public engagement for emerging biotechnologies can also be gleaned from the field of hESC research. In the US, since 1995, the use of federal funds for any research that involves creating or destroying human embryos has been prohibited by the Dickey-Wicker Amendment. In 2001, just 3 years after the derivation of hESCs became possible, President George W. Bush banned their further derivation using federal funds, citing this research as “at the leading edge of a series of moral hazards” (https://georgewbush-whitehouse.archives.gov/news/releases/2001/08/20010809-2.html). At the time, less than half of the US population agreed that hESC research was morally unacceptable (https://news.gallup.com/poll/21676/stem-cell-research.aspx). Numerous advocacy and engagement efforts were built on this baseline support, leading to the creation of state-level stem cell funding programs in California, Connecticut, Illinois, Maryland, New Jersey, and New York between 2004 and 2007, which have since invested billions of dollars in research (Karmali et al., 2010). Public support for hESC research has since fluctuated somewhat but has increased overall, with 66% finding it morally acceptable in 2020 (https://news.gallup.com/poll/21676/stem-cell-research.aspx).

Stem cells: Premature use

Stem cell research has long captured the public’s imagination and offered hope for many people with unmet medical needs. Ebullient newspaper headlines have fueled inflated expectations that stem cells can already grow new organs, extend an elite sport star’s career, or provide a second chance at life. Curious to learn whether stem cells can help them, many have turned to the internet for answers. Quick to capitalize on such expectations were commercial clinics marketing putative stem cell treatments online despite a paucity of credible data to support their claims (Baker 2005; Lau et al., 2008).

Concerned about these unscrupulous practices and the challenges such premature use of stem cells presented to patients and their families, the ISSCR Patient Handbook on Stem Cell Therapies was published in conjunction with the first guidelines for the responsible clinical translation of stem cell research (Hyun et al., 2008). Two years later, the ISSCR launched the “A Closer Look at Stem Cells” website to help people considering a stem cell treatment find out what was possible and to know what to ask. The site has subsequently been expanded, including information in 12 languages (www.closerlookatstemcells.org).

ISSCR was joined by other stem cell research organizations across the globe to counter online misinformation. For example, Stem Cells Australia partnered with local community advocacy and patient support services to create additional resources and identify opportunities to raise awareness about the sale of unproven stem cell interventions in the mainstream media and through community forums. While these efforts were initially focused on alerting Australians contemplating traveling abroad to the unproven nature of the interventions being offered, by 2011, a domestic marketplace emerged in Australia due to a regulatory inconsistency around the use of autologous cells and tissues (Munsie and Pera, 2014). While policy reforms were finally introduced in 2018 (Ghinea et al., 2020), the success in increasing consumer protections, including a ban on direct-to-consumer advertising, owes much to the community partnerships forged many years earlier and the sustained funding provided by the Australian government as part of major stem cell initiatives that championed enhancing public understanding of, and broad exchanges of opinions about, stem cell science alongside support for basic and clinical research.

HIV cure research

The field of HIV therapeutics provides a unique opportunity to leverage well-established and formalized existing models of community engagement to help ensure that new treatment approaches are properly designed and ethically sound. Despite the benefits of antiretroviral therapy (ART), HIV infection requires lifelong treatment, and there has been increasing interest in developing cell and gene therapies to induce a state in which individuals control HIV infection without the need for ongoing therapy (a “cure”). Community and stakeholder engagement efforts have helped establish the reasons why a cure is needed: (1) not all people can easily access or consistently take ART due to social, political, and economic determinants; (2) even modern ART, which is generally tolerable, has adverse effects; (3) despite ART, HIV persistence results in a chronic inflammatory state; and (4) many people with HIV (PWH) continue to face both external and internal stigmatization.

Informed by single-patient anecdotes that provide proof of concept for HIV eradication (e.g., the “Berlin” and “London” patients) or immunologic control (the “San Francisco” patient), there is a growing focus on cell and gene therapies to achieve these goals (Deeks et al., 2021). For example, approaches such as CCR5-targeted gene editing, the use of HIV-specific chimeric antigen receptor (CAR)-T cells, in vivo provirus editing, and the adeno-associated virus (AAV)-based delivery of genes encoding antiviral antibodies are all being attempted. However, a key difference between cell and gene therapy studies for HIV and other fields (e.g., oncology) is that the target population is generally healthy, and it is likely that the risk of such experimental therapy far exceeds the benefits on an individual level.

Participation in HIV cure research studies generally confers risk to both the individual participant (e.g., risk of experimental therapy) and risk to others, in particular sexual partners who are not living with HIV who are then at risk for HIV acquisition from the study volunteer. This is because study outcomes typically involve an analytic treatment interruption (ATI) in which, following an intervention, a volunteer pauses their HIV medications under careful monitoring for weeks or months to assess the intervention’s efficacy. In order to navigate these risks, HIV researchers have developed close partnerships with community representatives from populations living with HIV as well as their family, friends, and advocates. In certain settings, these partnerships have been critical to the safe and acceptable implementation of these studies. For example, researchers in San Francisco developed a “standard of prevention” risk reduction packet to specifically address HIV transmission risk during ATIs with the goal of empowering participants to mitigate transmission risk to their partners (Peluso et al., 2020). In addition, community engagement has in some cases allowed for the continuation of HIV cure research throughout the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, when many other research activities were paused or terminated entirely (Peluso et al., 2021). Overall, the HIV cure field provides a proof of concept for the strategies for, and value of, engaging community stakeholders in research activities; and as the field begins to extend further toward cell and gene therapy approaches, it is likely to encounter and address many issues that can be navigated by leveraging these partnerships (Deeks et al., 2021).

Goals and approaches to public engagement

Scheufele and colleagues argue that there are seven goals of public engagement: (1) avoid potential controversy; (2) educate the public; (3) build democratic capacity through deliberation; (4) widen representation of voices; (5) solicit input on value debates; (6) enable responsible innovation; and (7) shape policy (Scheufele et al., 2021). To help meet these goals, different modalities may be employed including communication, consultation, involvement, collaboration, and empowerment (Scheufele et al., 2021). However, it can be difficult to discern the intended goals of calls for public engagement around the ethical issue in stem cell-related research, complicating decisions about who is responsible for engagement and how best to accomplish it.

Regardless, at a minimum, scientists and funders have a responsibility to communicate what they are doing not just with each other but also with the public. This responsibility is based in part on the recognition that science is not value free and that public values matter in determining what constitutes appropriate science (Hurlbut et al., 2015). In addition, much of the work that scientists do is funded by governments, so the public has a vested interest in the process and outcomes of that research. Consequently, transparency about research is critical, and communications about it must use understandable language in order to make science more accessible to enable engagement of the general public. This is crucial in an era where there is growing skepticism about science. Nevertheless, it is important to recognize that scientific communication alone will not settle controversy; indeed, increased knowledge can be paradoxically associated with increased polarization (Boyd and Sugarman, 2022).

While it is beyond the scope of this meeting report to review various approaches to public engagement to overcome such challenges, it is worth considering deliberative polling, which is distinct from other methods of public consultation (standard opinion polls, focus groups, town meetings, citizen juries, and citizen assemblies). Deliberative polling provides a picture of the considered judgments of the public about what should be done. It is best applied to issues where there are competing, value-laden goals. Deliberative polling engages stratified random samples of a population in deliberations probing the pros and cons of policy proposals with moderated small group discussions as well as plenary sessions with competing experts or policy makers who answer questions composed by the small groups (Fishkin 2018). Many of these projects are experiments with separate control groups who do not deliberate but take the same questionnaire. Some projects are conducted with the Stanford Automated Deliberation Platform, which moderates the discussions in video groups of 10 or 12. The overall samples are usually several hundred, up to 1,000. Others are conducted face to face or, alternatively, entirely online with video-based discussions. About 110 deliberative polls have been convened in 34 countries. The process produces both quantitative data (based on the pre- and post questionnaires) and qualitative data based on the transcripts of small group discussions. Automated text analysis can be applied to the latter to give further evidence of the public’s reasoning on the issues posed. Deliberative polling has not yet been applied to bioethical controversies related to emerging biotechnologies, but it has been applied to many policy issues that engage scientific issues (especially climate change and energy policy as health care). As such, it may be well positioned to supplement other methods of engagement regarding emerging science.

Finally, public engagement may help stakeholders recognize and find means to achieve equity in research and healthcare, including the treatment of patients with chronic diseases. This will involve multiple measures, but it will be essential for all of those within the healthcare system, including researchers and physicians, to combat implicit bias and structural racism so that we can work toward a system of research in healthcare that holds promise for all. The case of sickle cell disease is illustrative. We hail the advances made in sickle cell disease research while there is often a lack of evidenced-based care at the bedside and, tragically, patients with sickle cell are denied care (https://nap.nationalacademies.org/read/25632/chapter/1#iii). Regrettably, sickle cell disease stigma, which has its roots in racism and racist attitudes, has detrimental consequences for patient health and negatively affects patient-provider relationships and care-seeking behaviors (Treadwell et al., 2020). Thus, broad stakeholder engagement will be essential to advance understanding of the role of racism and poverty in healthcare.

Such considerations also continue to be critical to addressing the striking lack of ethnic diversity in stem cell lines available for research—engaging minoritized ethnic communities in public forums and thoughtful dialogues should help to overcome the justifiable mistrust among these communities and design research that is beneficial to them (https://nyscf.org/resources/to-achieve-precision-medicine-diverse-stem-cell-biobanks-are-key/).

Conclusions

Emerging biotechnologies, such as those related to human stem cells, genome editing, and embryos, can involve profound ethical issues. As discussed in this meeting report, there have been calls for public engagement in hope of helping to inform deliberations about these issues. This is perhaps not surprising given how helpful engagement has been in moving forward ethically sound research and practice in some aspects of stem cell research, infertility treatments, and HIV-related research. Nevertheless, as described elsewhere, critical questions arise regarding how engagement is done (Scheufele et al., 2021; Boyd and Sugarman, 2022) and how it is responsibly incorporated into policies and practices. For stem cell-related research, there are also difficult challenges such as how to communicate cutting-edge science while having opportunities for mutual exchanges of opinions and how to engage stakeholders not just in high-income countries but also those in low- and mid-income countries. While additional deliberation about these issues is needed to establish best practices, scientists and clinicians should be prepared to participate in these important engagement activities.

Author contributions

All authors provided draft text related to their individual presentation at that the ISSCR Focus Session on June 15, 2022 (See Table 1), with the exception of S.L.S. (Simi Ahmed participated in the actual session, but Raeka Aiyar prepared that presentation and its draft text description on behalf of the NYSCF). J.S. combined and synthesized the contributed text to create a draft of the manuscript, which was circulated to all authors for review and editing. All authors approved of the final submitted version of the manuscript.

Acknowledgments

The planning group for this focus session included J.S. (chair), Insoo Hyun, K.K., M.M., and Zhaochen Wang. The ISSCR Ethics Committee provided further input. The focus session would not have been possible without the strong logistical support of Chris Barry, and Saliha Moore helped with preparation of this report. Simi Ahmed participated in the actual session, and Raeka Aiyar prepared the presentation on behalf of the NYSCF.

Conflict of interests

J.S. is a member of Merck KGaA’s Ethics Advisory Panel and Stem Cell Research Oversight Committee; a member of IQVIA’s Ethics Advisory Panel; a member of Aspen Neurosciences Clinical Advisory Panel; a member of a Merck Data Monitoring Committee; and a consultant to Biogen. None of these activities are related to the material discussed in this manuscript. A.C. is a board member of the ISSCR and is on the advisory board for Stem Cell Reports. K.K. was a member of the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing and currently is the chair of the Ethics Committee of the ISSCR. M.M. is a board member of the health charity, National Stem Cell Foundation of Australia.

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