In Bioethics, the Public Deserves More Than a Seat at the Table

Every time scientists present a groundbreaking biological innovation, it seems as though there is a crescendo of noise—articles beckoning for public discussion, social media posts sharing the public’s opinions, scientists urging for more public input about bioethical decisions. The noise grows and grows and then—silence.

In August 2022, two research groups published papers in Nature and Cell that demonstrated scientists’ newfound ability to create synthetic mouse embryos in the laboratory until 8.5 days post-fertilization—no egg cells, sperm cells, or wombs needed. The outcry was immediate: If this can be done with mice, are humans next?

Scientists were quick to ease the public’s worries: It’s not yet possible to create synthetic human embryos. Yet their response was concerning. Why did we need to wait until such a scientific advance occurred before we could discuss its implications? How can we have important discussions about bioethical issues—issues at the intersection of ethics and biological research—that already impact society?

Typically, when such challenging bioethical dilemmas arise, scientists and ethicists will discuss the potential implications on committees and in forums, and will often provide policy recommendations. But unfortunately, public input is not always sought—or is sought in a limited capacity. And whether their opinions make any difference to policy is an open question.

We should all have the right to not only partake in bioethical discussions—but to partake in them in an effective and impactful manner. Otherwise, we’ll go to sleep one day, wake up the next morning, and realize we live in a world that we had no hand in creating.

When it came to the mouse embryos, some scientists discussed the need for public input when making complex and controversial bioethical decisions, echoing a longstanding refrain. But creating avenues for public discussion and deliberation about bioethical issues can be difficult.

Designing public discussion opportunities is time consuming and requires the expertise of a wide variety of professionals. Meanwhile, barriers exist in the form of scientists and policymakers who believe that the public can’t meaningfully contribute to scientific discourse due to a lack of understanding.

Even if that were the case, it’s not a reason to exclude people who would be affected by such decisions. Institutions must extend the effort to both inform the public and allow them to express their opinion.

There are some initiatives that promote public deliberation, such as Harvard Medical School’s public bioethics forums, which bring together stakeholders to discuss important bioethical topics. Providing such spaces is an important first step, as it effectively opens a seat at the table. Healthy deliberation—one which allows people to hold conflicting viewpoints and actively discuss their beliefs rather than simply consume information—is critical for making bioethics a more inclusive and democratic space.

“We should all have the right to not only partake in bioethical discussions—but to partake in them in an effective and impactful manner.”

But public input doesn’t ultimately count for much if such discussions don’t exert any actual influence on policymaking. Despite their role in fostering educated discussions, initiatives such as Harvard’s do not allow citizens to contribute to new policy decisions.

Historically, there have been some attempts to do so. Since the 1970s, many countries, including the US, have implemented public deliberation as a part of bioethical decision-making, to varying degrees of success. In some instances, such as with the 1974 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, public opinion was considered and some of the commission’s final reports were heavily influential in policy. But again, it’s questionable how much input the public truly had. Their input was sought solely through public hearings. Bioethicists and policymakers comprised the commission and created the final reports.

Fortunately, more recently, there have been public deliberation efforts that provide citizens with an opportunity to influence policymaking decisions. For instance, the Citizens’ Reference Panel on Health Technologies in Ontario, Canada made a small yet critical impact on governmental decision-making. This panel was created to allow Ontarians to inform how regulatory bodies assess five health technologies. The one technology the panel had the most profound effect on was screening methods for colorectal cancers and polyps. While widespread screening has many benefits, citizens expressed some concerns about the loss of patient autonomy when screening was performed automatically without patient input. This point was added to a final recommendation document created by the Ontario Health Technology Advisory Committee, and committee members have since said that the point would have gone unnoticed had it not been for the panel.

Another example comes from Buckinghamshire in England, where a citizens’ jury expressed their opinions about how to tackle back pain, a major health problem for the county’s citizens. In this context, a citizens’ jury is a two- to five-day event where a few dozen members of the general public come together to discuss an issue and ultimately produce a recommendation document. The Buckinghamshire Health Authority, or BHA, promised that they would take the jury’s recommendations into account, and they did. The BHA then formed a project team to implement these recommendations.

This begs the question: What makes certain public deliberation efforts successful and others not?

If success is defined as a near-direct impact on policy decisions, a common theme emerges: Citizens’ panels and juries that are connected to a governmental organization tend to be more impactful policy-wise, particularly in the short term.

In both previous examples, the government was involved to varying degrees, and—perhaps more importantly—the public’s recommendations were actually prioritized. As Susan Goold, an ethicist and professor at the University of Michigan, put it in an interview with Undark, policymakers should never say “see you later” after a deliberative session.

In Buckinghamshire, as part of an agreement with the King’s Fund—a health improvements charity that was supporting this public deliberation effort—the BHA was required to follow the panel’s recommendations. If they chose not to, they had to state specific reasons. This ensured accountability and the implementation of the recommendations.

Another critical aspect of successful public deliberation efforts is appropriate organization. Julia Abelson, lead of the Public Engagement in Health Policy Project and a professor at McMaster University, explained that there are examples of government-initiated public deliberation that have had little impact as well as efforts not directly linked to the government that were very impactful.

The differentiating factor is thoughtful planning and organization. For instance, it’s critical that, during the design phase of the process, organizers set clear goals and objectives they’d like to meet by the end of deliberation.

Additionally, organizers should carefully consider how information is presented to participants. How questions are framed, for example, can affect whether new ideas emerge from participants. Another important component organizers need to consider is how discussions are moderated. For instance, are the facilitators actively shaping the discussion or solely preventing one participant from dominating the conversation?

Though some research has been done on this topic, many questions remain. What researchers know is that all of the elements above must come together to create a successful citizens’ panel that can impact policy down the line.

There is no question that public input is immensely valuable whether we’re discussing gene editing or the creation of synthetic embryos. Thankfully, the increase in the number of deliberation efforts reflects that. However, public deliberation is a tool, and like all tools, it requires a guiding hand.

We must ensure that governments are involved in deliberation efforts when necessary and that citizens’ panels are designed thoughtfully. We must do this so one day, when we go to sleep and wake up the next morning, we’ll see the sun rising on a world we’ve built together.

This article was originally published on Undark. Read the original article.

Image Credit: Furiosa-LPixabay

Parmin Sedigh
Parmin Sedigh
Parmin Sedigh is a science communicator and video creator based in Kingston, Ontario.
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