“There is nothing permanent except change”. This quote, attributed to Greek philosopher Heraclitus, has been echoed across centuries, serving as reassurance during times of personal or global shifts. Arguably, this sentiment about change is inherent in the work of the genetics community. Knowledge of genes, their function and how they manifest is rooted in being adept at revision, editing, and, once we are all comfortable with a concept, revising yet again.

The greater population is not as comfortable with change. Recently, the Centers for Disease Control and Prevention updated guidance regarding the use of face masks to mitigate spread of the COVID-19 virus. With many Americans opposed to wearing masks, it is no wonder that this new guidance received a mixed reception. On its face, the decision to not wear face masks may seem trivial and overly politicized. In truth, mistrust surrounding the entirety of the COVID-19 pandemic (from existence of the virus itself, to vaccinations) is generally split along party lines (save Black Americans, who have a general mistrust of all medicine).¹,² But when explored more deeply, the constant change of COVID-19 guidelines, not just political affiliation, is suggested as the root cause of frustration, confusion and ultimately widespread opposition to face mask policies in some areas.³

While most conversations about trustworthiness of the medical field have centered on minority populations, the pandemic has revealed that mistrust exists amongst individuals of all backgrounds. The problem of universal medical mistrust is not unique to the pandemic or immunology.² A study measuring the uptake of genetic testing based on healthcare policies reported a positive correlation of distrust and the need to consult with health insurance, as well as referral to a specialist to order testing, regardless of race.⁴ Certainly, anyone working in the field of genetics has grown accustomed to the past history of eugenics as a reason for skepticism of the genetic testing process. The strategic plan for the National Society of Genetic Counselors emphasizes the importance of access to genetic counselors and diverse delivery models to provide quality service.⁵ In order to realize this mission, the growth of widespread medical mistrust must be addressed.

In a climate where misinformation is abundant, mistrust of genetic testing has the opportunity to worsen. As we near the end of the worst days of the pandemic, the genetics community can glean lessons of how the nuances of public messaging, guideline transparency and availability of resources influence mistrust and, in the end, medical decision-making.

The testing process and availability of resources

Reliable testing to screen for COVID-19 became available four months after the first diagnosis in the United States.⁶ In the months that followed, a lack of testing kits and discord on where to access testing created suspicion of the entire scientific process and community.⁷ Who is profiting from this test? Why is it only available to certain people? What happens to my sample once the testing is done? Additionally, the recommendation of who met criteria for testing seemed to differ based on state, healthcare systems and even individual providers. In March 2020, a group of college students in Texas tested positive for COVID-19.⁸ The story, as reported by the lay media, reported that several of the students, who were primarily white and from affluent areas, were asymptomatic. The guideline in Texas at this time stipulated that testing be conducted only for symptomatic individuals over the age of 65. Whispers of how these students were able to skirt these guidelines grew to a roar on social media.

Overwhelmingly, the blame was placed on healthcare providers. The combination of testing unavailability and the appearance of disparate testing criteria created a gap in knowledge and trust easily filled by internet searches and misinformation. Inaccessibility of genetic testing does not pose the same panic as the lack of COVID-19 kits, primarily because hereditary conditions are not contagious. The broader lesson is that the lack of accessibility of testing creates a gap that is too easy to fill with options that are more readily available, such as anecdotes, outdated guidelines, or other non-genetics sources.

Further, if the criteria for who qualifies for testing seems disproportionately stringent, questions arise about why others have access to better care. In oncology, it is widely understood that reporting a history of ovarian cancer meets criteria for genetic testing. However, the burden of proof of a diagnosis is heavier for minorities or those with less education.⁹ Minorities are asked more often to confirm the diagnosis before testing can be initiated than white patients. These differences in care are tangible and can lead to individuals seeking answers elsewhere.

Transparency and the explanation of changing health guidelines

Perhaps one of the biggest takeaways from the pandemic is the importance of making scientific concepts digestible for the public. Indeed, immunology is a challenging science to explain, however the onus lies on the experts to make information accessible and usable. Providing high-level explanations of the COVID-19 vaccine-making process gave the impression that the touted medical experts were being evasive and thus not trustworthy. In daily news interviews with doctors and immunologists, terms like “mRNA”, “variant strains” and “specificity” were used without much definition or education as to how these concepts are not novel, and have appeared in other health conditions in the past. Likewise, the revision of public health guidelines was generally explained in similar high-level technical words that assumed the audience could fully comprehend complex virology theories. Expecting an overtaxed, weary populace to comprehend subjects they have never studied and also use this knowledge to guide policy was a miscalculation that hurt the overall credibility of the medical community.

Genetic counselors are trained to tailor the delivery of medical information, however medical jargon still hamstrings meaningful dialogue. While genetics information is often communicated in analogies in efforts to maximize its relatability, there are still concerns with the amount of information we share, and if doing so in one session is actually counterproductive. In a study aimed at understanding how to communicate genetics concepts with low-literacy patients, genetic counselors cited a worry of using plain language at the cost of providing accurate information.¹⁰ The struggle to provide clear and succinct COVID-19 vaccination messaging should serve as a testament that when discussing new medical ideas, less is more.

The public health strategies surrounding the pandemic will be dissected in the following decades. We will learn what missteps were the most costly and which communities were most impacted by these errors. While immunology and genetics differ in their implications to the general population, medical mistrust in both arenas are comparable and thus, may have similar solutions. The problems with access to care, lack of transparency in messaging and mistrust did not first appear in 2020. The COVID-19 pandemic just laid them bare for all to see.

Please return shortly for the next installment of this blog, which will discuss possible solutions to the issues of access to care, lack of transparency in messaging and mistrust in the field of genetics, as a result of the lessons learned from the COVID-19 pandemic.

References:

1. Douglas J. Opel, Bernard Lo, Monica E. Peek. Addressing Mistrust About COVID-19 Vaccines Among Patients of Color. Ann Intern Med. [Epub ahead of print 9 February 2021]. doi:10.7326/M21-0055.

2. Benkert R, Peters RM, Templin TN (2019) Sociodemographics and Medical Mistrust in a Population-Based Sample of Michigan Residents. Int J Nurs Health Care Res 6: 092. DOI: 10.29011/IJNHR-092.1000092.

3. Claire Gillespie Updated January 05, & Gillespie, C. (n.d.). Anti-Maskers staged a Protest inside of a Los Angeles MALL, even as Covid-19 Cases soar in California. Retrieved Apr 03, 2021.

4. Armstrong K, Putt M, Halbert CH, Grande D, Schwartz JS, Liao K, Marcus N, Demeter MB, Shea J. The influence of health care policies and health care system distrust on willingness to undergo genetic testing. Med Care. 2012 May;50(5):381-7. doi: 10.1097/MLR.0b013e31824d748b. PMID: 22473221; PMCID: PMC3360826.

5. Carey, M. (2018). National Society of Genetic Counselors Strategic Plan 2019- 2021 (p. 19, Issue brief No. September 2018). Chicago, IL: National Society of Genetic Counselors. doi:https://www.nsgc.org/Portals/0/Docs/NSGC%202019-2021%20Strategic%20Plan%20APPROVED%209-20-18.pdf.

6. American Clinical Laboratory Association. (2020, June 27). ACLA UPDATE ON COVID-19 TESTING CAPACITY. American Clinical Laboratory Association. https://www.acla.com/acla-update-on-covid-19-testing-capacity.

7. O'Connor, K. K. and L. (2020, May 11). COVID-19 testing problems started early, U.S. still playing from behind. Modern Healthcare. https://www.modernhealthcare.com/technology/covid-19-testing-problems-started-early-us-still-playing-behind.

8. Lewis M, Sanchez R, Auerbach S, et al. COVID-19 Outbreak Among College Students After a Spring Break Trip to Mexico — Austin, Texas, March 26–April 5, 2020. MMWR Morb Mortal Wkly Rep 2020;69:830-835. DOI: http://dx.doi.org/10.15585/mmwr.mm6926e1external icon.

9. Williams CD, Bullard AJ, O'Leary M, Thomas R, Redding TS 4th, Goldstein K. Racial/Ethnic Disparities in BRCA Counseling and Testing: a Narrative Review. J Racial Ethn Health Disparities. 2019 Jun;6(3):570-583. doi: 10.1007/s40615-018-00556-7. Epub 2019 Apr 8. PMID: 30963508.

10. Galen Joseph, Robin Lee, Rena J. Pasick, Claudia Guerra, Dean Schillinger, Sara Rubin, Effective communication in the era of precision medicine: A pilot intervention with low health literacy patients to improve genetic counseling communication, European Journal of Medical Genetics, Volume 62, Issue 5, 2019, Pages 357-367, ISSN 1769-7212, https://doi.org/10.1016/j.ejmg.2018.12.004.

Carla McGruder, MS, CGC

Carla McGruder is a Senior Clinical Genetic Counselor at Color Health, where she provides leadership on the All of Us Research Program. Carla also provides genetic services in non-traditional ways through Good Genes Genetic Counseling Services, LLC. She received her M.S. in Genetic Counseling from the University of Texas-Houston Health Science Center Graduate School of Biomedical Sciences. Carla serves as a mentor and networking beast with the Minority Genetics Professionals Network. She is a dedicated member of the Texas Society of Genetic Counselors and has served on the executive board since 2016. She also serves on various appointed committees with the National Society of Genetic Counselors.