The gene editing conversation: Public dialogue will require major investments

In 2014 biochemist Jennifer Doudna of the University of California at Berkeley awoke from a nightmare that would shift the focus of her world-class scientific career. Two years earlier, with her colleague Emmanuelle Charpentier, now director of the Max Planck Unit for the Science of Pathogens in Berlin, Doudna had achieved one of the most stunning breakthroughs in the history of biology, becoming the first to use a process called CRISPR-Cas9 to alter the genetic makeup of living organisms. Their “gene-editing” tool would allow scientists to efficiently insert or delete specific bits of DNA with unprecedented precision.

But as applications related to modifying human genes were soon reported in the scientific literature, Doudna began to worry. In the dream, a colleague asked if she would help teach someone how to use CRISPR (Clustered Regularly Interspaced Short Palindrome Repeats). She followed him into a room to be greeted by Adolph Hitler wearing a pig face. The nightmare reinforced her belief that public discussion of the technology was far behind the breakneck pace of its emerging applications. She feared a public backlash that would prevent beneficial forms of gene-editing research from moving forward.

Doudna organized a workshop among scientists, ethicists, and other experts; they published a 2015 paper in Science urging an international summit on the ethics of gene-editing and a voluntary pause in scientific research that would alter the genetic makeup of humans. In a TED talk that year, she called for a global conversation about gene editing so scientists and the public could consider the full range of social and ethical implications. Her 2017 book, A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution, coauthored with her former student Samuel Sternberg, follows up on these efforts.

In their book, Doudna and Sternberg systematically review the vast number of applications across the life sciences that CRISPR-Cas9 may enable. With livestock, gene editing can be used to produce leaner meat, to make livestock more resistant to infection, to remove allergens from eggs and milk, to reduce the use of antibiotics, and to achieve other outcomes that benefit human nutrition and animal welfare. In medicine, gene editing is being used to engineer mosquitoes so they no longer spread viruses such as malaria or Zika, and mice so they no longer transmit Lyme disease to ticks, thereby reducing infection rates among humans. In other applications, the gene editing of goats, chickens, and rabbits may allow pharmaceuticals to be manufactured more quickly, at higher yields, and at lower cost than by way of traditional laboratory methods. In the future, gene-edited pigs may even be a major source for lifesaving organ transplants, providing tissues that are less likely to be rejected by human patients.

In a process called somatic gene editing, scientists are exploring ways to treat diseases caused by a single mutated gene such as cystic fibrosis, Huntington’s, and sickle cell disease. The patient’s cells in the affected tissues would be either edited within the body or edited outside and returned to the patient. In both cases, the corrections would not be passed on to offspring. But in terms of human applications, the most widely debated research involves so-called germline gene editing. This process would alter sperm, eggs, and early stage embryos to protect a child against inheritable diseases such as diabetes, Alzheimer’s, and forms of cancer. But such techniques could also potentially be used to select for specific physical traits or to boost human performance by way of denser bones and greater endurance, creating so-called designer babies. In each application, as a human matured, the altered DNA would be copied into every cell, and passed on to their progeny.

Not surprisingly, public opinion surveys reveal widespread public reservations about the technology and a firm belief that scientists should consult the public before applying gene-editing techniques to humans. Given the many important considerations that gene editing raises, in 2017 the U.S. National Academies of Sciences, Engineering, and Medicine recommended that scientists invest in ongoing input from the public regarding the benefits and risks of human genome editing, and that more research be conducted to better understand how to facilitate such a process.

But to lead a national and global conversation about gene editing, scientists will need help not only from their colleagues in the humanities, social sciences, and creative arts, but also from journalists and philanthropists. Informed public discussion about gene editing is not possible without high-quality, sustained reporting from journalists with deep knowledge of the subject. And new initiatives designed to understand public attitudes, to facilitate public dialogue, and to report on the complexities of gene editing will not be possible without financial support from philanthropists and their foundations.

A skeptical public

Given that discussion of human gene editing still remains primarily confined to scientific meetings and to elite gatherings such as TED conferences, it is not surprising that a 2016 Pew Research Center survey showed that 42 percent of Americans have heard “nothing at all” about the topic, compared with 48 percent “a little” and 9 percent “a lot.” But polls also show that Americans hold fairly consistent opinions and judgments about gene editing, even as they possess very little information about the complex subject. To do so, individuals actively draw on their religious and cultural values, familiar narratives from popular culture, and similarities to past debates.

For example, in the same Pew survey, when asked about the moral acceptability of gene-editing techniques intended to give healthy babies a reduced risk of disease, only 28 percent of Americans consider the application acceptable, compared with 30 percent who say it is unacceptable and 40 percent who are not sure. Notably, among the one-third of Americans who can be classified as highly religious, only 15 percent consider such applications morally acceptable (see figure above). When asked separately if such an application meddled with nature and crossed a line that should not be crossed, 64 percent of highly religious Americans agreed with the statement.

For many religious Americans, gene editing is likely closely associated with past debates over embryonic stem cell research and fetal tissue research. In these controversies, Christian leaders mobilized opposition to government funding by framing research as a violation of religious teachings. From a traditional Christian perspective, human life begins at conception and is created in God’s image. Embryos are considered to be divinely created human beings. When scientists destroy or alter human embryos, they take on the role of God, violating divine will. Therefore, traditional Christians believe that embryo research is morally wrong and that if it is funded by the government using tax revenues, such funding makes all Americans complicit in destroying human life. In the Pew survey, for example, among those who said gene editing was morally unacceptable, more than one-third of responses made reference to changing God’s plan or violating his will.

But as various survey findings indicate, it is not just strongly religious Americans who have moral reservations about gene editing. Even among nonreligious Americans, 17 percent say that gene editing to give babies a much reduced risk of disease is morally unacceptable, and 37 percent say they are unsure. In a follow-up question, more than one-quarter of nonreligious respondents say they oppose gene editing to improve the health of a baby because it would be meddling with nature and cross a line that should not be crossed. When asked more specifically if saving a baby’s life required testing on human embryos or altering the genetic makeup of the whole population, about half of all Americans say that such scenarios would make the application less acceptable to them (see figure above). A 2016 survey conducted by Harvard University’s Chan School of Public Health finds even stronger levels of reservations. In this case, when asked about changing the genes of unborn babies to reduce their risk of developing certain serious diseases, 65 percent of Americans said that such an application should be illegal. More than 80 percent said the same when asked about gene editing to improve intelligence or physical traits.

What explains the reservations voiced by both religious and nonreligious Americans? Bioethicists have used the term Yuck Factor to describe a “visceral repugnance” and “emotional opposition” felt by the public when they first hear about human genetic engineering. This repugnance, wrote University of Chicago ethicist Leon Kass in an oft-cited 1997 article in the New Republic, is an “emotional feeling of deep wisdom,” that leads an individual to “intuit and feel, immediately without argument, the violation of things that we rightfully hold dear.” The Yuck Factor likely has its origins in Kantian and Christian philosophies of human dignity that permeate Western culture. These traditions, as political theorist Francis Fukuyama of Stanford University described in his 2002 book Our Post Human Future, emphasize that human life has a higher moral place than the rest of the natural world. Therefore, according to these philosophies, even at its earliest stages of development, human life should always be treated with a sacred respect.

Such teachings have shaped Western culture to the extent that their principles are passed on even to those who have never set foot in a church. The Yuck Factor is therefore a relatively intuitive response, a reaction formed below the level of conscious deliberation on the part of an individual, often in the absence of substantive information. When asked about emerging gene-editing techniques that would involve altering human embryos or engineering desired traits, most individuals probably have difficulty articulating why they might believe it to be morally questionable; they just know it when they feel it.

Journalism matters

Although scientists hold a responsibility to engage the public about the social implications of gene editing, informed public dialogue ultimately depends heavily on journalists and their news organizations. Quality science reporting is essential to understanding how and why gene-editing research is being conducted, including the connections between new advances and ongoing debates over funding, governance, regulation, ethics, accessibility, uncertainty, and patent rights. Even in today’s dramatically altered media landscape, coverage in print and online, at both traditional and new media outlets, still drives discussion of complex issues such as gene editing. These news organizations provide the information, frames of reference, and narratives that scientists, journalists, funders, policy makers, and societal leaders frequently draw upon to set policy, make decisions, or communicate with various segments of the public who trust their advice.

Yet for the past two decades, the news media have faced crippling economic and technological disruptions that have forced cutbacks in the amount of reporting on complex science topics such as gene editing. As University of Wisconsin-Madison communication scholar Dietram Scheufele has documented, due to layoffs there are also far fewer veteran journalists on staff who can draw on decades of experience to provide their readers critical context. Industry practices within journalism have also changed. In a business model dependent on Facebook and Google to generate traffic and advertising revenue, former New Republic editor Franklin Foer warns that journalists are being told by their editors to actively seek out trending topics that are likely to catch on or go viral, rather than to rely on their news judgment to decide what are the most important stories to tell readers. As a consequence, coverage of gene editing loses out to the latest sensational cultural event or breaking political scandal. When gene editing is covered, headlines and story angles may exaggerate the technology’s promise and peril in an effort to win scarce reader attention.

Now is the time, therefore, for scientists and philanthropists to help journalists and news organizations to correct for these pressures and biases. They can do so by sponsoring workshops where a diversity of experts and stakeholders gather to discuss with journalists and editors the scientific, ethical, and legal implications of gene editing, making it easier for journalists to cover gene editing accurately and on a regular basis. Philanthropists, universities, and research institutions can also provide fellowships and other sources of financial support that enable journalists to spend the weeks and months required to substantively report on the subject.

But journalists are not the only professionals who are needed to write compellingly about the scientific and social implications of gene editing. Scientists, ethicists, and social scientists can also contribute commentaries and articles to the popular press, offering independent insights and context. In one initiative to help facilitate such articles, the Kavli Foundation is partnering with the Alan Alda Center for Communicating Science and a number of science magazines and online publications (including American Scientist) to train scientists to apply the techniques and standards of journalism in writing about complex topics such as gene editing.

Investing in dialogue

Yet even as quality journalism provides the main architecture around which informed debate about gene editing will take place, the scientific community, along with universities, philanthropies, and research institutions, must also help create opportunities for direct public participation in dialogue and deliberation. Such an effort starts with the sponsorship of carefully conducted social-science research that assesses public discourse about gene editing, the sources of information and arguments that are shaping debate, and the factors that are influencing public attitudes. In turn, this research should inform the design and evaluation of a variety of dialogue-based communication initiatives organized by scientific organizations, government agencies, and universities.

Over the past decades, across Europe and North America, efforts to promote dialogue-based science communication have taken various forms, but as the University of Calgary’s Edna Einsiedel notes, each format shares a few common principles. First, in these initiatives, communication is defined as an iterative back-and-forth process between various segments of the public, experts, and decision-makers. Such approaches assume that there is no single “correct” way to talk about and understand the social implications of a complex subject such as gene editing. Second, rather than being top-down and controlled by scientists and their partners, societal leaders and the public are invited to be active participants in defining what is discussed, sharing their own knowledge and perspectives. Third, there is no single “public” with which to communicate or engage, but rather multiple “publics” exist. These include but are not limited to church leaders and congregations, racial or ethnic groups, parents and patient advocates, and political identity groups such as liberals or conservatives.

Among the most important types of organized dialogue initiatives are smaller, more intimate events that bring together scientists with other societal leaders to facilitate the sharing of perspectives, and the forging of relationships. In one leading example, the Dialogue on Science, Ethics, and Religion (DoSER) at the American Association for the Advancement of Science has organized workshops that convene scientists and clergy to discuss topics of mutual concern and possible disagreement such as embryonic stem cell research. To inform the discussion, focus groups were conducted in advance of the events, and the meetings were professionally facilitated. Scientists and clergy participating in the meetings indicated that the sessions helped break down stereotypes about each other, facilitating learning and mutual respect. In a related initiative, DoSER has worked with seminary schools and synagogues to develop curricula and resources that aid clergy in leading more constructive conversations about complex scientific topics with their congregations.

As these examples suggest, it is important to remember that religion is more than just a belief system that shapes how people understand gene editing. Churches are communication contexts where discussions can at times be framed in strongly moral terms by congregational leaders, reinforced by conversations that churchgoers have with others, and shaped by information provided directly when at church. For these reasons, on a topic such as gene editing, churches often serve as powerful networks of civic recruitment where congregants receive requests to voice their opinion to elected officials. During the debate over embryonic stem cell research, for example, among the strongest predictors of whether individuals had become involved politically on the issue was whether they had discussed or received information about the topic at church. In sum, when it comes to public dialogue about gene editing, scientists can either cede communication at churches to religious leaders or become active partners in facilitating and enriching church-based discussions.

Yet to promote broader public engagement across both religious and nonreligious segments of the public, the scientific community can also benefit by partnering with experts specializing in the humanities, philosophy, and the creative arts. Scholars in the humanities and philosophy draw on literature, religious traditions, and ethical frameworks to help the public consider what is good, what is right, and what is of value about a complex topic such as gene editing. Writers, artists, filmmakers, and other creative professionals are among society’s most inspiring storytellers about complex issues, and they are able to communicate about gene editing in imaginative, compelling, and novel ways. Integrated into public dialogue initiatives, their work can motivate different forms of learning, sponsor critical reflection and deliberation, and produce thought-provoking visions of the future.

In a past example that serves as a prototype for such initiatives, faculty at the University of Alberta in Canada hosted workshops in 2008 that facilitated discussions about the social implications of human genetic engineering among visual artists, scientists, bioethicists, and social scientists. Informed by their conversations together, the artists were commissioned to produce visual works reflecting on the themes discussed, while the other participants were asked to write short essays. The project culminated in the exhibit “Perceptions of Promise: Biotechnology, Society, and Art,” which toured North America. As part of the exhibit tour, forums were held at museum venues, generating local news coverage of the themes expressed. The essays along with the artistic works were published as part of a book and catalog sold at art museums, bookstores, and online.

Apart from artistic exhibits, classic works of literature and films can also serve a similar function in stimulating public dialogue. For example, the 1997 film Gattaca is often used in college classrooms to stimulate student discussion of the social implications of human engineering. Research suggests that rather than alarming audiences, science fiction TV and film portrayals may help familiarize viewers with the moral dimensions of human genetic engineering, thereby helping them overcome their intuitive Yuck Factor reservations. This year, in recognition of the 200-year anniversary of the publication of Frankenstein, faculty at Arizona State University have published an annotated version of the novel that also features essays from scientists and scholars in the humanities and social sciences. With support from the National Science Foundation, the university is also coordinating nationwide events and activities at science museums and centers, which include exhibits, an online multimedia game, and at-home activities for use by parents. Each is carefully designed to foster discussion about the social and ethical dimensions of gene editing and other technological innovations.

For many, such broad-based initiatives may be beyond their ability to organize or to fund. Major investments in public dialogue and in supporting high-quality journalism about gene editing will take coordinated action from leaders of the scientific community and their peers across fields including the news media and philanthropy. But scientists and others should not overlook the contributions to public dialogue they can make starting right now. University scientists, by way of their classrooms and new degree programs, can partner with their peers in the social sciences and humanities to equip students with the knowledge and skills they need to think critically about the future of gene editing and similar advances. At Cornell University, for example, one model to emulate is the undergraduate major in Biology and Society. Among the most popular on campus, the major enables students to group foundational training in the biological sciences with coursework in science communication, the social sciences, and the humanities.

Within their local communities, individual scientists can also actively encourage discussions about gene editing by way of informal conversations and by volunteering to give presentations to community groups, connecting with others by way of shared interests, values, and identities. Ultimately, for Jennifer Doudna, her goal is to motivate the next generation of scientists to engage much more actively and directly with the public, applying the principle of “discussion without dictation” on how gene editing should be used. All scientists, regardless of discipline, she argues in her recent book, must be prepared to participate in conversations with the public about the far-reaching consequences of gene editing and similarly powerful technologies.

Citation:

Nisbet, M. (2018). The Gene-Editing Conversation. American Scientist, 106(1), 15-19.

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