In bioethics, the public deserves more than a place at the table

In bioethics, the public deserves more than a place at the table

In bioethics, the public deserves more than a place at the table

Whenever scientists present a revolutionary biological innovation, there seems to be a crescendo of noise…articles inviting public discussion, social media posts share public opinions, with scientists asking for greater public input into bioethical decisions. The noise grew and grew, then the silence.

In August 2022, two research groups published articles in Nature and Cell which demonstrated scientists’ new ability to create synthetic mouse embryos in the lab up to 8.5 days after fertilization – without eggs, sperm or uterus. The outcry was immediate: If it can be done with mice, will humans be next?

Scientists were quick to allay public concerns that it is not yet possible to create synthetic human embryos. Yet their response was concerning. Why did we have to wait for such a scientific breakthrough to happen before we could discuss its implications? How can we have meaningful discussions about bioethical issues – issues at the intersection of ethics and biological research – that are already impacting society?

Typically, when such difficult bioethical dilemmas arise, scientists and ethicists discuss potential implications in committees and forums, and often make policy recommendations. But unfortunately, public input is not always sought, or is solicited in a limited capacity. And whether their opinions make a difference in politics is an open question.

We should all have the right not only to participate in bioethical discussions, but also to participate in them in an effective and impactful way. Otherwise, we will fall asleep one day, wake up the next morning and realize that we live in a world that we did not help create.

When it comes to mouse embryos, some scientists have discussed the need for public participation when making complex and controversial bioethical decisions, echoing a long-standing refrain. But creating avenues for public discussion and deliberation on bioethical issues can be difficult.

Designing opportunities for public debate takes time and requires the expertise of a wide variety of professionals. Meanwhile, barriers exist in the form of scientists and policy makers who believe the public cannot contribute meaningfully to scientific discourse due to a lack of understanding.

Even if that were the case, that is no reason to exclude people who would be affected by such decisions. Institutions must extend the effort both to inform the public and to allow it to express its opinion.

Some initiatives encourage 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 up a seat at the table. Healthy deliberation – which allows people to hold conflicting viewpoints and actively discuss their beliefs rather than simply consuming information – is essential to making bioethics a more inclusive and democratic space.

“We should all have the right not just to participate in bioethical discussions, but to participate in them in an effective and impactful way.”

But public input ultimately doesn’t matter much if these discussions have no real influence on policy-making. Despite their role in promoting informed discussion, initiatives such as Harvard’s do not allow citizens to contribute to new policy decisions.

Historically, there have been a few attempts in this direction. Since the 1970s, many countries, including the United States, have implemented public deliberation as part of bioethical decision-making, with varying degrees of success. In some cases, as with the 1974 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, public opinion has been taken into account and some of the commission’s final reports have had a great influence on policy. But again, one wonders how much the audience really contributed. Their input was solicited only through public hearings. Bioethicists and policy makers composed the commission and wrote the final reports.

Fortunately, more recently, public deliberation efforts have enabled citizens to influence policy decisions. For example, the Citizens’ Reference Group on Health Technologies in Ontario, Canada, had a small but essential impact on government decision-making. This panel was created to allow Ontarians to inform how regulators 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 advantages, citizens have expressed some concerns about the loss of patient autonomy when screening is performed automatically without patient intervention. This point was added to a final recommendation document created by the Ontario Health Technology Advisory Committee, and committee members have since said the point would have gone unnoticed without the committee.

Another example comes from Buckinghamshire in England, where a citizens’ jury gave their opinion on how to tackle back pain, a major health issue for citizens in the county. 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 it would consider the jury’s recommendations, and it did. The BHA then formed a project team to implement these recommendations.

This begs the question: what makes some public deliberation efforts successful and others not?

While success is defined as near-direct impact on policy decisions, a common theme emerges: citizen panels and juries tied to a government organization tend to have more impact on policy, especially in the short term.

In the previous two examples, the government was involved to varying degrees and, perhaps more importantly, recommendations from the public were actually prioritized. As Susan Goold, an ethicist and professor at the University of Michigan, said in an interview with darkpolicy makers should never say “see you later” after a deliberative session.

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

Another essential aspect of successful public deliberation efforts is proper organization. Julia Abelson, Public Engagement in Health Policy project lead and professor at McMaster University, explained that there are examples of government-initiated public deliberations that have had little impact, as well as efforts not directly related to the government that have had a great impact.

The differentiating factor is thoughtful planning and organization. For example, it is essential that during the design phase of the process, the organizers define clear goals and objectives that they would like to achieve by the end of the deliberation.

In addition, organizers should carefully consider how information is presented to attendees. The way questions are worded, for example, can affect whether new ideas emerge from participants. Another important element that organizers must take into account is the moderation of discussions. For example, are the facilitators actively shaping the discussion, or are they only preventing one participant from dominating the conversation?

Although some research has been done on this topic, many questions remain. What researchers do know is that all of the above elements must come together to create an effective citizens’ panel that can impact policy in the long run.

There is no doubt that public input is extremely valuable, whether it involves gene editing or the creation of synthetic embryos. Fortunately, the increase in the number of deliberative efforts reflects this. However, public deliberation is a tool, and like all tools, it requires a guide.

We must ensure that governments are involved in deliberative efforts when necessary and that citizens’ panels are thoughtfully designed. We must do this so that one day, when we go to bed and wake up the next morning, we see the sun rise over a world we have built together.

This article originally appeared on Undark. Read the original article.

Image credit: Furiosa-L / Pixabay

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