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What genetic counselors can teach the CDC about the transmission of uncertainty

 


UUncertainty has become an unpleasant part of our daily lives — perhaps more than most of us, including policy makers, want to believe. Nevertheless, all public health communications from the Centers for Disease Control and Prevention, the World Health Organization, and other authorities are guaranteed.

At this point in the pandemic, public health communicators continue to try to educate the general public about what is known about Covid-19, so we also need to help them understand what they are. no is known.

We are a group of genetic counselors — medical professionals who routinely translate complex and uncertain information about health and risk into plain language. Many of our patients are in a rare condition. This means that even after a final diagnosis, even after years of searching, there is often limited evidence and information that can be provided about what you can expect and do. Communicating new and uncertain information about Covid-19 poses similar challenges.

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That is why we believe that genetic counseling can serve as a model for public health communication to educate and empower the public on uncertainty. Our approach to communicating uncertainty is simple, but not always easy. Discuss what is known and remain transparent about what is unknown and why.

We believe it is necessary and beneficial to gain patient trust through a transparent discussion of uncertainty and by adopting a similar approach to communicating about the Covid-19 pandemic. We believe that we can increase public understanding, increase trust in facilities, and reduce people’s risks. Covid-19 risk.

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Through the pandemic, the message about public health is Flatten the curve The campaign helped people understand and visualize the dangers of an unchecked community in early 2020.

However, there is also a shortage of messages at important moments.The symbol of this has been updated CDC guidance for quarantine and quarantine Published December 27, 2021.The flaw in this statement is Caused public confusion Publish opportunities to improve communication about uncertainty.

This guidance inherits the legacy of lack of communication regarding scientific uncertainty. Despite the efforts of scientists and public health authorities over the last two years, questions remain about Covid-19. With the advent of new variants, the general public is asking more questions than ever before.

Still, the CDC Guidance does not acknowledge that nothing is known about the Omicron variant, or even Covid-19. Instead, the statement is that the guidance change is due to “what we currently know about COVID-19 and Omicron variants,” and the update is “most of the SARS-CoV-2 infections occur early.” It emphasizes that it is “motivated by science to show that it does”, but does not explain or cite this evidence. Guidance is Scientists scramble to understand the rapid spread of Omicron..

We believe that uncertainty requires more attention to nuances.

for example, Change face mask guidance In the early days of the pandemic, public confusion and frustration arose. Rather than emphasizing that the lack of evidence highlights the effectiveness of face masks in the air. US Surgeon General Jerome Adams It positively discouraged people from wearing them. This made it difficult to gain public confidence when new studies showed that face masks actually reduced the spread of SARS-CoV-2, the virus that causes Covid-19. Evolving information about testing, vaccination, and new variants has caused similar whiplash.

You may need to make decisions based on preliminary evidence, but consistently point out if recommendations are based on incomplete information, and your current understanding may change as you learn. Policy makers are obliged to point out that there is. This may be especially true for studies of new phenomena, such as new variants, which are likely to be based on small, non-representative samples. Guidance should clearly summarize the quality of evidence that underlies the recommendations.

If the guidelines change, the general public also deserves clear and complete information on the reasons for the new guidelines. In particular, Press release Along with the CDC’s revised quarantine and quarantine guidelines, discuss non-medical contributions to changes, such as the need to balance economic benefits for controlling the spread of SARS-CoV-2 and lack of testing resources. Was not done. The reasons presented in the statement did not fully explain the reasons for the policy shift, so it left the media and the general public to speculate on the underlying motivations.

If the three of us produced a revised quarantine and quarantine guideline publication based on the principles used in clinical practice, we would add a brief summary of evidence to support this decision and these studies are limited. Acknowledging that, he said: Guidance changes are an effort to balance the need to keep society open to controlling the spread of the virus, and future guidance may change as scientists learn more about the virus. I foresaw that. This should have provided people with more tools to understand new recommendations and why they were needed.

Attempting to regulate behavior without educating people about Covid-19 is no longer fruitful and involves social costs. In our experience, it is possible and beneficial to provide genetic counseling to patients, to recognize scientific uncertainties and to deal with them directly. There is no doubt that we will pay attention in the short term, but we will build mutual trust in the long term.

By learning to coexist with SARS-CoV-2, scientific uncertainty can no longer be ruled out. Instead, we have to talk about it and learn to live with it.

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

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