What genetic counselors can teach the CDC about communicating uncertainty

Uncertainty has become an uncomfortable part of our daily lives — perhaps more than most of us, including policymakers, would like to believe. Yet public health communications from the Centers for Disease Control and Prevention, the World Health Organization, and other authorities all arrive with a note of certainty.

At this point in the pandemic, as public health communicators continue trying to educate the public about what is known about Covid-19, they also need to help people make sense of what is not known.

We are a group of genetic counselors — health professionals who translate complex and uncertain information about health and risk into plain language on a daily basis. Many of our patients have rare conditions, which means that, even if they finally receive a diagnosis, sometimes after years of searching, there is often limited evidence and information we can give them about what they can expect and what they can do. Conveying new and uncertain information about Covid-19 poses similar challenges.

That’s why we believe that genetic counseling can serve as a model for public health communication to educate and empower the public about uncertainty. Our approach to communicating uncertainty is simple, though not necessarily easy: discuss what is known and be transparent about what is not known and why.

We find it both necessary and beneficial to earn our patients’ trust through transparent discussion about uncertainty, and believe that adopting a similar approach to communicating about the Covid-19 pandemic can improve public understanding, enhance trust in institutions, and empower people to reduce their Covid-19 risks.

Throughout the pandemic, public health messaging has sometimes triumphed, such as the flatten the curve campaign, which helped people understand and visualize the dangers of unchecked community spread in early 2020.

But messages have also fallen short at critical moments. Emblematic of this is the updated CDC guidance for quarantine and isolation issued on December 27, 2021. The flaws in this statement have caused public confusion and expose opportunities for improved communication about uncertainty.

The guidance inherits a legacy of poor communication about scientific uncertainty. Despite the efforts of scientists and public health officials over the past two years, questions remain about Covid-19. With the emergence of new variants, the public has more questions than ever.

Yet, the CDC guidance does not acknowledge what still isn’t known about the Omicron variant — and about Covid-19, for that matter. Instead, the statement emphasizes that the change in guidance is due to “what we currently know about COVID-19 and the Omicron variant” and that the update is “motivated by science demonstrating that the majority of SARS-CoV-2 transmission occurs early in the course of illness,” though it never describes or cites this evidence. The guidance projects a definitive air even as scientists scramble to understand Omicron’s rapid spread.

We believe that uncertainty calls for more attention to nuance, not less.

For instance, changing guidance on face masks early in the pandemic created public confusion and frustration. Rather than emphasizing that a lack of evidence put the effectiveness of face masks up in the air, authorities including U.S. Surgeon General Jerome Adams actively discouraged people from wearing them. This made it difficult to then gain public trust when emerging studies showed that face masks actually reduce the spread of SARS-CoV-2, the virus that causes Covid-19. Evolving information about testing, vaccination, and new variants have caused similar whiplash.

While it can be necessary to make decisions based on preliminary evidence, it is incumbent upon policymakers to consistently point out when recommendations are based on incomplete information and that our current understanding may change as more is learned. This may be especially true for studies about new phenomena such as emerging variants, which are more likely to be based on small and unrepresentative samples. Guidance should clearly summarize the quality of evidence on which recommendations are based.

When guidelines change, the public also deserves clear and complete information about reasons for the new ones. In particular, the press release accompanying the CDC’s revised quarantine and isolation guidelines did not discuss any nonmedical contributions to the change, such as the need to balance economic interests against controlling the spread of SARS-CoV-2 and the dearth of testing resources. Since the reasons presented in the statement did not completely explain the reason for the policy shift, it left the media and the public to speculate about underlying motives.

If the three of us had crafted the announcement of the revised quarantine and isolation guidelines based on the principles we use in our clinical practice, we would have added a brief summary of the evidence supporting this decision, acknowledged that these studies have limitations, stated that the guidance change is an effort to balance the need to keep society open against controlling viral spread, and foreshadowed that future guidance may change as scientists learn more about the virus. This would have provided people with more tools to make sense of the new recommendations and why they were needed.

Trying to regulate behavior without educating people about Covid-19 is no longer fruitful and comes with societal costs. In our experience providing patients with genetic counseling, acknowledging and directly addressing scientific uncertainty is both possible and beneficial. There’s no question that it takes care and attention in the short term, but it builds mutual trust in the long term.

In learning to coexist with SARS-CoV-2, we can no longer banish scientific uncertainty. Instead, we must learn to talk about it and live with it.

Chenery Lowe is a certified genetic counselor and a doctoral student at Johns Hopkins Bloomberg School of Public Health. Liesl Broadbridge is a certified genetic counselor and a doctoral student at Rutgers University. Laynie Dratch is a certified genetic counselor at the University of Pennsylvania. The opinions expressed here are the authors’ and do not necessarily reflect those of their institutions.