Genomics in Patient Care and Workforce Decisions in High-Level Isolation Units: A Survey of Healthcare Workers

Abstract

The impact of host genomics on an individual's susceptibility, immune response, and risk of severe outcomes for a given infectious pathogen is increasingly recognized. As we uncover the links between host genomics and infectious disease, a number of ethical, legal, and social issues need to be considered when using that information in clinical practice or workforce decisions. We conducted a survey of the clinical staff at 10 federally funded Regional Ebola and Other Special Pathogen Treatment Centers to understand their views regarding the ethical, legal, and social issues related to host genomics and the administrative and clinical functions of high-level isolation units. Respondents overwhelmingly agreed that genomics could provide valuable information to identify patients and employees at higher risk for poor outcomes from highly infectious diseases. However, there was considerable disagreement about whether such data should inform the allocation of scarce resources or determine treatment decisions. While most respondents supported a confidential employer-based genomic testing system to inform individual employees about risk, respondents disagreed about whether such information should be used in staffing models. Respondents who thought genomic information would be valuable for patient treatment were more willing to undergo genetic testing for staffing purposes. Most respondents felt they would benefit from additional training to better interpret results from genetic testing. Although this study was completed before the COVID-19 pandemic, the responses provide a baseline assessment of provider attitudes that can inform policy during the current pandemic and in future infectious disease outbreaks.

Introduction

It is increasingly recognized that host genomics often impact an individual's susceptibility, immune response, and risk for severe outcomes from a given infectious pathogen.^1-3 For example, a single nucleotide polymorphism of the antiviral protein myxovirus resistance A was associated with a lower risk of acquiring severe acute respiratory syndrome infection in 2003.³ Less is known about host genomics and the Middle East respiratory syndrome. One study, however, associated the presence of the human leukocyte antigen (HLA) class II allele, HLA-DRB1*11:01, with Middle East respiratory syndrome susceptibility, but not disease severity.⁴ As the COVID-19 pandemic continues, there is intense interest in understanding how host genomics might affect an individual's susceptibility to infection with SARS-CoV-2 (the virus that causes COVID-19), the risk for severe outcomes of infection, or the potential response to therapeutic agents and vaccines.^2,5

As we uncover the links between host genomics and clinical and immune responses to specific infectious pathogens, a number of ethical, legal, and social issues need to be considered when using that information for public health policy or clinical practice.^6-8 For example, if host genomics can provide information about the likelihood of survival from an infectious disease, should that information be used to determine allocation of specific resources, particularly in times of scarcity? If host genomics confer protection against infection with a particular pathogen, could such information guide decisions about which healthcare workers should be eligible or selected to provide care on the frontlines of an infectious disease outbreak?^7,8 Little is known about how clinicians think about these difficult questions.

In response to the 2014-2016 Ebola outbreak, the US Office of the Assistant Secretary of Preparedness and Response established a network of 10 Regional Ebola and Other Special Pathogen Treatment Centers to provide care for patients infected with high-consequence infectious pathogens.⁹ These high-level isolation units (HLIUs) have specially designed environmental control systems to limit the potential spread of pathogens and are staffed by multidisciplinary care teams with advanced training in infection prevention practices, personal protective equipment, and the safe care of patients with highly infectious diseases.^10,11 The treatment centers were among the first clinical units to activate in the United States to care for patients with COVID-19.^12-15

We surveyed clinical staff at the 10 federally funded treatment centers to understand their views regarding the ethical, legal, and social issues related to host genomics and how this information might be used to inform the administrative and clinical functions of HLIUs. Although this study was completed before the COVID-19 pandemic, the responses provide a baseline assessment of provider attitudes and valuable insight that can inform policy during the current pandemic and in future infectious disease outbreaks.

Methods

Survey Development

Two of the coauthors led a series of roundtable discussions in the fall of 2017 with members of the Johns Hopkins Biocontainment Unit to discuss general issues related to genomics and high-level isolation. These discussions led to a series of questions that were the focus of a working group meeting on April 25, 2018, with representatives from HLIUs around the world, as part of a global workshop on high-level isolation. Based on these activities, the researchers created the survey instrument and refined it using feedback from 3 cognitive interviews with staff from the Johns Hopkins Biocontainment Unit.

Survey Content

The survey included background information about high-consequence infectious diseases, including Ebola, and the potential role of genomics in severe outcomes and mortality from these diseases. Respondents were asked to read this material and complete a series of questions regarding their views about the ethical acceptability and value of hypothetically using host genomic information in HLIU-based patient care and workforce decisions.

With respect to patient care, respondents rated how valuable the following information would be for clinical decision making: a patients' genetic risk of treatment nonresponse, treatment side effects, mortality, and long-term sequelae. Respondents rated the value of genetic information in these decisions on a 4-point scale: not at all valuable, minimally valuable, moderately valuable, or very valuable.

Next, they rated their agreement with statements about the ethical acceptability of using genetic information in patient care, for example: “It is ethically acceptable to withhold expensive resources from patients with higher genetic risk of mortality.” Respondents rated their agreement with the ethical acceptability of using “genetic information about risk of mortality from high-consequence infectious diseases to make specific treatment decisions,” “to withhold expensive resources from patients with higher genetic risk of mortality,” and “to prioritize care for patients with higher genetic risk of mortality.” Additional statements included: “In making treatment decisions, there is no distinction between using genetic risk factors for mortality versus using other information about risk factors such as comorbidities” and “There is an ethical obligation to inform patients about their genetic risk of developing long-term sequelae from the disease.” Response options followed a 4-point Likert scale: strongly disagree, disagree, agree, and strongly agree.

The ethical acceptability of using genetic information in HLIU admissions was similarly assessed. Specific applications of genetic testing among healthcare providers were proposed, and respondents rated their agreement about whether it was ethically acceptable to use “genetic information to make decisions about which patients are admitted into the unit” in general, and when there were more patients awaiting admission than beds available, “to deny admission to patients with higher genetic risk of mortality,” “to prioritize admission for patients with higher genetic risk of mortality,” and “to prioritize admission for patients with lower genetic risk of mortality.”

Respondents also rated their agreement with statements about healthcare providers being genetically tested for HLIU staffing purposes, for example: “HLIUs should be allowed to use genetic risk information to make work assignment decisions.” Specific applications of genetic testing for healthcare workers were proposed, and respondents rated their agreement with the use of this information for determining healthcare workers' risk of disease susceptibility, long-term sequelae, viral/bacterial persistence, vaccine nonresponse, vaccine side effects, treatment nonresponse, and treatment side effects. For each of these applications, respondents also indicated their personal willingness to undergo genetic testing to inform staffing within HLIUs.

Respondents also rated their agreement with the importance of genetic testing of healthcare workers in HLIUs. Statements included: “HLIUs should be allowed to use genetic risk information to make work assignment decisions,” “HLIU directors should be allowed to prohibit an individual with increased risk of infection from providing direct patient care based on their genetic information,” “Employers should offer confidential genetic testing for relevant infectious disease outcomes as an option for employees in HLIUs,” and “It is ethically acceptable to use genetic information on healthcare workers' susceptibility to high-consequence infectious disease to determine the level of personal protective equipment used.”

Respondents also rated their confidence in their genetics knowledge and how much additional training they wanted regarding the relationship between human genetics and susceptibility, immune response, and risk for severe outcomes of infectious pathogens. Prior training in genetics was also evaluated.

Sociodemographic questions included age, gender, race, role and duration of work in the HLIU, and whether they had ever cared for a patient with a high-consequence infectious disease such as Ebola, Middle East respiratory syndrome, extensively multidrug-resistant tuberculosis, Lassa fever, Crimean-Congo hemorrhagic fever, Marburg hemorrhagic fever, severe acute respiratory syndrome, or monkeypox. At the end of the survey, respondents were asked to submit free-text comments about their thoughts related to the role of human genomics in managing infectious diseases.

Survey Recruitment and Administration

The online survey link was emailed to the HLIU administrators of the 10 Regional Ebola and Other Special Pathogen Treatment Centers, who forwarded it to clinical staff. Administrators were reminded by email to share the survey link with their staff. Data were collected between February and September 2019.

To protect respondents' confidentiality, we ensured that individual responses could not be linked to specific HLIUs. Anonymization was achieved by administering the survey in 3 separate parts and assigning respondents a new random identification number for each part of the survey. In the first part, respondents answered the majority of the survey items. If they agreed, they proceeded to a second part where they could report in which state they worked. If they agreed again, they proceeded to a third part and provided their email address to receive a $10 Amazon gift card for their participation.

Data Cleaning and Analysis

The distributions and ranges of all variables were examined. Four-point Likert scale responses were dichotomized (not at all/minimally valuable versus moderately/very valuable; strongly agree/agree versus strongly disagree/disagree). The number of years respondents worked in the HLIU was calculated as 2019 (year of data collection) minus the year they started working in the HLIU, and then transformed into a binary variable (<5 years versus ≥5 years). Due to sparse data, staff titles were combined so that “advanced practice provider” included nurse practitioner, medical director, doctor, and physician's assistant. The median number of respondents per HLIU was calculated.

All data were explored in univariate analyses, including sociodemographic information, respondents' views on the value and ethical acceptability of using genetic testing for patient care, respondents' views on the ethical acceptability of and personal willingness to undergo genetic testing for workforce assignments, and personal familiarity with genetics and past genetics training.

The association between respondents' willingness to undergo genetic testing and their level of agreement with HLIUs using healthcare workers' genetic results to prohibit those with increased risk of infection from providing patient care was explored in post hoc cross-tabulations. P values for proportions were estimated using 1-sided Fisher's exact tests of general association. Odds ratios (ORs) and 95% confidence intervals (CIs) were estimated using unadjusted logistic regression models; P values were estimated using Wald tests. Most odds ratios compare the odds of strongly agreeing/agreeing versus strongly disagreeing/disagreeing with each statement. For some statements, the odds of indicating a genetic test would be moderately/very valuable are compared with the odds of it being not at all/minimally valuable. For all analyses, P < .05 indicated statistical significance. Cronbach alpha (α) coefficients of reliability and standardized, average inter-item correlations were estimated for all scales. Data were analyzed using Stata, version 16 (StataCorp LP, College Station, TX).

Ethical Review

The Johns Hopkins Medical Institutions Institutional Review Board deemed this study exempt from review.

Results

Sociodemographic Characteristics of the Study Population

In total, 112 HLIU staff in 10 states responded to the survey. The median number of respondents per HLIU was 6 (interquartile range 2 to 9). As shown in Table 1, most respondents self-identified as White (75.9%) and female (66.1%). Respondents varied by age. More than half (53.6%) were nurses or nurse leads, and the majority (77.7%) had worked in the HLIU for less than 5 years. Advanced practice providers included 4 (3.57%) physician leads, 13 (11.61%) physicians, and 1 (0.89%) physician assistant. None of the respondents had previously treated patients with high-consequence infections including Ebola virus disease, Middle East respiratory syndrome, extensively multidrug-resistant tuberculosis, Lassa fever, Crimean-Congo hemorrhagic fever, Marburg hemorrhagic fever, severe acute respiratory syndrome, monkeypox, or other diseases.

Table 1.

Sociodemographic Characteristics of the Study Population (N = 112)

Sociodemographic Characteristics	n (%)
Gender^a
Female	74 (66.07)
Male	36 (32.14)
Age
18-34	46 (41.07)
35-44	36 (32.14)
45-54	20 (17.86)
≥55	10 (8.93)
Race^b
White	85 (75.89)
Other	27 (24.11)
Staff title^c
Nurse/nurse lead	60 (53.57)
Advanced practice provider	18 (16.07)
Infection control	9 (8.04)
Respiratory therapist	4 (3.57)
Laboratory technician	9 (8.04)
Other	12 (10.71)
Years worked in the HLIU
<5 years	87 (77.68)
≥5 years	25 (22.32)
Median number of respondents per HLIU^d
Median (interquartile range)	6 (2-9)
Previously treated patients with
Ebola virus disease	0 (0.00)
Middle East respiratory syndrome	0 (0.00)
Extensively drug-resistant tuberculosis	0 (0.00)
Lassa fever	0 (0.00)
Crimean-Congo hemorrhagic fever	0 (0.00)
Marburg hemorrhagic fever	0 (0.00)
Severe acute respiratory syndrome	0 (0.00)
Monkeypox	0 (0.00)
Other	0 (0.00)

Gender: 2 (1.79%) preferred not to answer.

Race: “Other” includes 4 (3.57%) who selected White and another race, 6 (5.36%) Black/African American, 3 (2.68%) American Indian/Alaska Native, 6 (5.36%) Asian, 1 (0.89%) Hawaiian Native/Pacific Islander, and 8 (7.14%) who preferred not to answer (Hispanic ethnicity was inadvertently unmeasured). Race percentages may not add up to 100%, as more than 1 selection was allowed.

Nurse includes 53 (47.32%) nurses and 7 (6.25%) nurse leads. Advanced practice provider includes 0 (0.00%) nurse practitioners, 4 (3.57%) doctor leads, 13 (11.61%) doctors, and 1 (0.89%) physician assistant.

Missing 1 (0.89%).

Abbreviations: HLIU, high-level isolation unit.

Attitudes Toward Genetic Testing to Inform Patient Admission and Treatment

As shown in Table 2, the majority of respondents indicated that genetic testing would be moderately/very valuable for maximizing treatment nonresponse (88.4%; OR [compared with not at all/minimally valuable] 8.25; 95% CI, 4.53 to 15.00), side effects (86.6%; OR 7.46; 95% CI, 4.18 to 13.31), long-term sequelae (86.6%; OR 7.46; 95% CI, 4.18 to 13.31), and mortality (80.4%; OR 4.50; 95% CI, 2.77 to 7.31). Most respondents disagreed that when beds are scarce, it is acceptable to: use genetic information for patient admissions (61.6%; OR [compared with strongly disagree/disagree] 0.61; 95% CI, 0.41 to 0.89), deny patients with a higher risk of mortality admission (66.1%; OR 0.50; 95% CI, 0.34 to 0.74), or prioritize patients with a lower risk of mortality admission (60.7%; OR 0.63; 95% CI, 0.43 to 0.93). Half (50.9%; OR 0.95; 95% CI, 0.65 to 1.37) of respondents disagreed that patients with a higher genetic risk of mortality should be prioritized for admission when hospital beds are scarce.

Table 2.

Participants' Views of Genetic Testing for Admission and Patient Care in a High-Level Isolation Unit (N = 112)

	Not at All/ Minimally Valuable n (%)	Moderately/Very Valuable n (%)	OR (95% CI)^d	P Value^f
Value of genetic test for increased risk of:
Treatment nonresponse^a	12 (10.71)	99 (88.39)	8.25 (4.53-15.00)	<.01
Side effects from treatment^b	13 (11.61)	97 (86.61)	7.46 (4.18-13.31)	<.01
Developing debilitating long-term sequelae^b	13 (11.61)	97 (86.61)	7.46 (4.18-13.31)	<.01
Mortality^b	20 (17.86)	90 (80.36)	4.50 (2.77-7.31)	<.01
Cronbach α (average interitem correlation)	0.96 (0.85)

	Strongly Disagree/ Disagree n (%)	Strongly Agree/ Agree n (%)	OR (95% CI)^e	P Value^f
When beds are scarce, it is ethically acceptable to use genetic information to:
Make decisions about which patients are admitted to the unit^a	69 (61.61)	42 (37.50)	0.61 (0.41-0.89)	.01
Deny admission to patients with higher genetic risk of mortality^a	74 (66.07)	37 (33.04)	0.50 (0.34-0.74)	<.01
Prioritize admission for patients with higher genetic risk of mortality^a	57 (50.89)	54 (48.21)	0.95 (0.65-1.37)	.78
Prioritize admission for patients with lower genetic risk of mortality^b	68 (60.71)	43 (38.39)	0.63 (0.43-0.93)	.02
Cronbach α (average inter-item correlation)	1.00 (1.00)
It is ethically acceptable to use genetic information:^c
To make specific treatment decisions^a	34 (30.36)	77 (68.75)	2.26 (1.51-3.39)	<.01
To withhold expensive resources from patients with higher genetic risk of mortality^a	86 (76.79)	25 (22.32)	0.29 (0.19-0.45)	<.01
To prioritize care for patients with higher genetic risk of mortality^a	59 (52.68)	52 (46.43)	0.88 (0.61-1.28)	.51
Use of genetic information for patient treatment:^c
There is no distinction between using genetic risk factors for mortality versus using other information about risk factors such as comorbidities^b	56 (50.00)	54 (48.21)	0.96 (0.66-1.40)	.85
There is an ethical obligation to inform patients about their genetic risk of developing long-term sequelae from the disease^b	5 (4.46)	105 (93.75)	21.0 (8.56-51.50)	<.01
Cronbach α (average interitem correlation)	0.83 (0.49)

Missing 1 (0.89%).

Missing 2 (1.79%).

Items in the table are from the same scale.

Not at all/minimally valuable is the baseline group.

Strongly disagree/disagree is the baseline group.

P value estimated with a Wald test.

Abbreviations: α, alpha; CI, confidence interval; OR, odds ratio.

Most respondents (68.8%; OR 2.26; 95% CI, 1.51 to 3.39) strongly agreed/agreed it was ethically acceptable to use genetic information about risk of mortality from high-consequence infectious diseases to make specific treatment decisions. However, only a minority of respondents (22.3%; OR 0.29; 95% CI, 0.19 to 0.45) agreed that expensive resources should be withheld from patients with a higher risk of mortality. Respondents were split as to whether patients with a higher risk of mortality should be prioritized for treatment (strongly agree/agree: 46.4% versus strongly disagree/disagree: 52.7%; OR 0.88; 95% CI, 0.61 to 1.28).

Most respondents (93.8%; OR 21.00; 95% CI, 8.56 to 51.50) agreed there was an ethical obligation to inform patients about their genetic risk of developing long-term sequelae from an infectious disease. Approximately half (48.2%; OR 0.96; 95% CI, 0.66 to 1.40) of respondents indicated there was no distinction between using genetic risk factors to estimate mortality versus using other information about risk factors, such as age or underlying comorbidities.

Attitudes Toward Genetic Testing to Inform Workforce Assignments

As shown in Supplemental Table 1 (www.liebertpub.com/doi/suppl/10.1089/hs.2020.0182), respondents overwhelmingly agreed (90.2%; OR 10.10; 95% CI, 5.27 to 19.34) that HLIUs should offer employees confidential genetic testing to reveal information about relevant infectious disease outcomes; however, they were split as to the ethical acceptability of using genetic testing to inform workforce decisions. Approximately half of respondents (50.9%; OR 1.04; 95% CI, 0.72 to 1.50) indicated HLIUs should be allowed to use genetic risk information to make work assignment decisions, 47.3% (OR 0.91; 95% CI, 0.63 to 1.33) agreed that HLIU directors should be allowed to prohibit an individual with increased genetic risk of infection from providing direct patient care, and 48.2% (OR 0.95; 95% CI, 0.66 to 1.37) indicated that it is acceptable to use genetic information about healthcare workers' susceptibility to high-consequence infectious diseases to determine the level of personal protective equipment used.

Respondents indicated that genetic testing was important for determining healthcare providers' risk of vaccine nonresponse (75.0%; OR 3.23; 95% CI, 2.08 to 5.02), developing serious vaccine side effects (74.1%; OR 3.07; 95% CI, 1.99 to 4.75), contracting disease (68.8%; OR 2.26; 95% CI, 1.51 to 3.39), developing long-term sequelae (70.5%; OR 2.47; 95% CI, 1.64 to 3.72), risk of viral/bacterial persistence (72.3%; OR 2.70; 95% CI, 1.76 to 4.10), risk of treatment nonresponse (75.9%; OR 2.70; 95% CI, 1.76 to 4.10) and risk of mortality if infected (73.2%; OR 3.40; 95% CI, 2.18 to 5.31).

The overwhelming majority of respondents would be personally willing to undergo genetic testing for HLIU staffing purposes regarding their increased risk of vaccine nonresponse (83.0%; OR 5.47; 95% CI, 3.26 to 9.17), increased risk of serious vaccine side effects (83.0%; OR 5.17; 95% CI, 3.12 to 8.56), decreased risk of contracting disease (resistance: 77.7%; OR 3.48; 95% CI, 2.23 to 5.43), increased risk of contracting disease (susceptibility: 78.6%; OR 3.83; 95% CI, 2.42 to 6.05), increased risk of developing long-term sequelae (81.3%; OR 4.55; 95% CI, 2.80 to 7.38), increased risk of viral/bacterial persistence (78.6%; OR 4.00; 95% CI, 2.51 to 6.38), increased risk of treatment nonresponse (83.0%; OR 5.17; 95% CI, 3.12 to 8.59), increased risk of serious treatment side effects (82.1%; OR 4.84; 95% CI, 2.95 to 7.93), and increased risk of mortality if infected (80.4%; OR 4.29; 95% CI, 2.67 to 6.89).

Confidence in Genetics Knowledge and Desire for Training

Most respondents indicated they had low (43.8%) or moderate (37.5%) confidence in their genetics knowledge, as shown in Table 3. Nearly all (99.1%) respondents indicated they would benefit from additional genetics training, with most wanting a moderate (44.6%) or high (34.8%) amount of additional training. Respondents' level of confidence in their genetics knowledge was not associated with how much genetics training they desired (P = .22; data not shown).

Table 3.

Participants' Confidence in Genetics Knowledge and Desire for Additional Training (N = 112)

	n (%)
Confidence in your genetics knowledge^a
No confidence	7 (6.25)
Low confidence	49 (43.75)
Moderate confidence	42 (37.50)
High confidence	13 (11.61)
Additional training you would want about human genetics of infectious disease^b
No additional training	1 (0.90)
A little additional training	22 (19.64)
A moderate amount of additional training	50 (44.64)
A high amount of additional training	39 (34.82)
Types of genetic education received^b
CME/CEU course	37 (33.04)
Medical/nursing/graduate school course	59 (52.68)
College/undergraduate course	63 (56.25
Self-directed genetics education^c	55 (49.11)
Grand rounds	22 (19.64)
Seminar/workshop	23 (20.54)
Residency course	8 (7.14)
Any other genetics education	26 (23.21)

Missing 1 (0.89).

Yes responses shown; multiple responses allowed and, therefore, proportions sum to more than 100%.

For example, through reading journal articles.

Abbreviations: CEU, continuing education unit; CME, continuing medical education.

Perceptions of Using Genetic Information and Willingness to Undergo Genetic Testing

Respondents' perceptions of using genetic information for workplace decisions was associated with their personal willingness to undergo genetic testing. Among the majority of respondents who would be willing to undergo testing to assess their risk of contracting disease (susceptibility), 59.1% agreed and 40.9% disagreed that HLIU directors should use this information for the purpose of making general workforce and staffing decisions in general (OR 16.68; 95% CI, 3.67 to 75.68), and for prohibiting high-risk healthcare personnel from providing direct patient care (OR 31.78; 95% CI, 4.10 to 246.49). Results were similar for their willingness to undergo genetic testing to assess their risk of developing long-term sequelae, viral/bacterial persistence, treatment nonresponse, treatment side effects, vaccine nonresponse, and vaccine side effects (P < .01; Supplemental Table 2, www.liebertpub.com/doi/suppl/10.1089/hs.2020.0182).

Reliability of Scales

Cronbach's alpha coefficients of reliability ranged from 0.81 to 1.00 for 5 scales about genetic testing of healthcare workers and patients for prioritization of staffing schedules and patient care. The interitem correlations for the same scales ranged from 0.51 to 1.00 (Table 2; Supplemental Table 1).

Discussion

This study explores how healthcare providers feel about the responsible use of genetic data to make clinical care and workforce decisions in the context of highly infectious diseases. Providers from the 10 federally funded Regional Ebola and Other Special Pathogen Treatment Centers overwhelmingly agreed that genomics could provide valuable information for helping identify patients at higher risk for poor outcomes from highly infectious diseases. The vast majority of respondents felt that genetic testing that provided information about treatment response, side effects, morbidity, and mortality would be valuable in clinical practice. The majority also felt that genomic information would be beneficial when making decisions about specific treatment options for highly infectious diseases. Most respondents supported a confidential employer-based genomic testing system to inform individual employees about their risk. Most respondents felt they would benefit from additional training in genetics to be able to better interpret results from such testing. The scales used had good to excellent reliability, although some interitem correlations were only moderate.

Healthcare providers in HLIUs agreed that genetic data have potential clinical value. However, the effective and responsible use of genetic information is an area of considerable disagreement and underdetermination. Providers disagreed about whether genetic information should inform decisions to admit patients to an HLIU, the allocation of scarce resources, or clinical treatment decisions. Despite their support for a confidential genetic testing system for individual employees, providers disagreed about whether such information should be used to inform staffing models. Respondents were also split on whether or not genetic information about mortality risk should be considered in a manner similar to other risk factors for severe outcomes such as underlying comorbidities. This could reflect some degree of “genetic exceptionalism,” the idea that genetic information is somehow different from other medical information.¹⁶ It is not clear how providers would feel about using other risk factors to determine allocation of scarce resources or eligibility for specific treatments in the context of HLIUs. The ethics of using different kinds of prognostic information for clinical decision making and resource allocation in HLIUs needs more focused attention and clarification, especially with the rising development of multifactor risk prediction models that incorporate genetics.^17,18

Nearly all respondents felt that confidential genetic testing should be offered by employers if that testing provided information related to infectious disease outcomes of staff. Respondents who thought genetic information would be valuable for patient treatment were more likely to be willing to undergo genetic testing for workforce decision-making purposes. While this information could provide individuals with an opportunity to make decisions regarding their clinical role at an institution based on their own personal risk, it might be difficult for employers to use such information in designing staffing models or assigning clinical responsibilities.⁷ The Genetic Information Nondiscrimination Act of 2008 prevents employers from discriminating against employees on the basis of genetic information.¹⁹ Under this law, employers are not allowed to make employment decisions related to any aspect of employment based on genetic information, including if that information pertains to the risk of developing a particular disease.¹⁹ It is unclear if exceptions could be made during a public health emergency.²⁰ More work needs to be done to clarify the ethical, legal, and social issues surrounding the use of such information in times of crisis.

Most respondents thought they would benefit from additional training in genetics to be able to interpret information from genetic testing. This is not surprising, as prior studies have shown that physicians have low confidence in their ability to apply genetic data to clinical practice.^21,22 As the number of clinical applications for genetic technology increases, there is a need to develop innovative ways to prepare the clinical workforce to use this information.^23,24 Our survey confirms the need to expand these educational efforts to include a focus on highly infectious diseases.

Our study has limitations. This was an opt-in, cross-sectional survey. Respondents may not have been representative of all HLIU workers due to nonresponse. Despite having 112 respondents, the number of physicians in the sample was small, precluding comparison across disciplines. The number of respondents by HLIU was not reported to protect confidentiality, as numbers in some states were small. Since we do not have an official count of the number of staff in HLIUs nationally, it is also not possible to know what percentage responded to the survey overall. P values and odds ratios should be cautiously interpreted due to small cell sizes in several bivariable analyses, which contributed to wide confidence intervals. We did not provide estimates of the magnitude of risk imparted by host genomic differences. It is possible that responses would have changed based on the magnitude of the risk in question, or the way in which that data were presented (eg, an increase in risk from 1% to 2% or a doubling of risk).²⁵ Surveys capture what respondents think at a point in time, not why they hold specific views. Whether the views expressed here were motivated by concerns about freedom, being uninformed about genomics, or other reasons remains unknown. Survey results are subject to social desirability bias,²⁶ although the potential for this was limited by anonymizing responses.

These data were collected prior to the COVID-19 pandemic. It is very possible that attitudes and beliefs may have changed after providers cared for COVID-19 patients in their HLIUs and other hospital units. We plan to conduct a follow-up survey to interrogate this possibility. During the COVID-19 response, healthcare workers who were not part of HLIUs cared for patients and faced challenges previously only typical of HLIU workers. Further research should be conducted to understand what healthcare providers involved in COVID-19 patient care think of the issues explored here and the reasoning behind their views. As the evidence for host genetic susceptibility and response to SARS-CoV-2 and other highly infectious diseases grows,² there will likely be a push to incorporate genetic information into inpatient care. Depending on how the Genetic Information Nondiscrimination Act of 2008 is interpreted, this research could inform how genetic information is incorporated into clinical management and staffing decisions during future pandemics and routine hospital care.

Providers from HLIUs believe that genetic information may be valuable in the care of patients infected with high-consequence pathogens. However, more work is needed to understand the role of such information in decisions about resource allocation, access to care, and determining staffing models for HLIUs.

Footnotes

Acknowledgments

The authors would like to thank the members of the Johns Hopkins Biocontainment Unit, the Johns Hopkins Center for Bridging Infectious Disease, Genomics, and Society (BRIDGES), and the Johns Hopkins Berman Institute of Bioethics for their assistance in identifying the issues explored in this survey. We would also like to thank the Maryland Department of Health, the US Office of the Assistant Secretary for Preparedness and Response, and the National Emerging Special Pathogens Training and Education Center for their continued support of high-level isolation unit preparedness. This work was supported by grant number RM1HG009038 from the National Human Genome Research Institute. Jennifer E. Gerber also received support for manuscript revisions from RTI International. The funders had no involvement in the design, implementation, analysis, interpretation, or reporting of this study.

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