Recusa familiar para doação de córneas para transplante: fatores associados e tendência / Negativa familiar para donación de córneas para trasplante: factores asociados y tendencia / Family refusal to donate a cornea for transplantation: associated factors and trends

Resumo Objetivo Analisar a recusa familiar de doação de córnea para transplante em uma Organização de Procura de Órgãos. Métodos Estudo quantitativo do tipo transversal sobre as recusas de córnea de doadores em situação de morte encefálica. A fonte de dados foi constituída pelos Termos de Autorização de Doação de Órgãos e Tecidos firmados entre janeiro de 2001 a dezembro de 2020 em uma Organização de Procura de Órgãos. Os dados foram coletados, tabulados e analisados de forma descritiva e inferencial. O presente estudo foi aprovado pelo Comitê de Ética em Pesquisa. Resultados Dos 2.447 Termos de Autorização de Doação de Órgãos e Tecidos firmados no período, 620 (25.34%) recusaram a doação de córneas. Com relação à tendência temporal de recusas de doação de córneas, o único período que apresentou significância foi de 2001 a 2009, quando as faixas etárias de zero a 11 anos e 12 a 19 anos demonstraram tendência decrescente, e a faixa etária maior ou igual a 60 anos, mostrou-se crescente. No período total de 2001 a 2020, as faixas etárias dos 20 a 40 anos, 41 a 59 anos e maior ou igual a 60 anos apresentaram, 48%, 59% e 73%, respectivamente, menores chances de recusa da doação de córneas. Conclusão A faixa etária apresentou associação com a recusa, tendo em vista que os indivíduos de maior idade apresentaram maiores índices.

Resumen Objetivo Analizar la negativa familiar de donación de córneas para trasplante en una Organización de Búsqueda de Órganos. Métodos: Estudio cuantitativo tipo transversal sobre la negativa de córnea de donantes en situación de muerte encefálica. La fuente de datos estuvo compuesta por los Términos de Autorización de Donación de Órganos y Tejidos firmados entre enero de 2001 y diciembre de 2020 en una Organización de Búsqueda de Órganos. Se recopilaron los datos, luego se tabularon y se analizaron de forma descriptiva e inferencial. El presente estudio fue aprobado por el Comité de Ética en Investigación. Resultados De los 2447 Términos de Autorización de Donación de Órganos y Tejidos firmados en el período, 620 (25,34 %) negaron la donación de córneas. Con relación a la tendencia temporal de negativas de donación de córneas, el único período que presentó significación fue de 2001 a 2009, cuando los grupos de edad de 0 a 11 años y de 12 a 19 años demostraron una tendencia decreciente, y el grupo de edad mayor o igual a 60 años se mostró creciente. En el período total de 2001 a 2020, los grupos de edad de 20 a 40 años, de 41 a 59 años y mayor o igual a 60 años presentaron un 48 %, un 59 % y un 73 %, respectivamente, menor probabilidad de negativa de donación de córneas. Conclusión El grupo de edad presentó relación con la negativa, considerando que los individuos de mayor edad presentan mayores índices.

Abstract Objective To analyze family refusals to donate a cornea for transplantation in an Organ Procurement Organization. Methods This was a quantitative cross-sectional study on corneal donation refusals from potential brain-dead donors. The data source was based on the Terms of Authorization for Donation of Organs and Tissues signed from January 2001 to December 2020 in an Organ Procurement Organization. Data were collected, tabulated, and analyzed in a descriptive and inferential manner. The present study was approved by the Research Ethics Committee. Results Of the 2,447 Terms of Authorization for Donation of Organs and Tissues signed in the above period, 620 (25.34%) of them refused to donate a cornea. Regarding the time trend of corneal donation refusals, the period 2001-2009 was the only one that showed significance, when the 0-11 and 12-19 age groups showed a decreasing trend and that of 60 years or older showed an increasing trend. In the period 2001-2020, the age groups of 20-40, 41-59, and 60 years or older had lower rates of refusal to donate a cornea (48%, 59%, and 73%, respectively). Conclusion The age group is associated with refusal because older individuals had the highest refusal rates.

Refusal to participate in research among hard-to-reach populations: The case of detained persons.

Providing insights on refusal to participate in research is critical to achieve a better understanding of the non-response bias. Little is known on people who refused to participate, especially in hard-to-reach populations such as detained persons. This study investigated the potential non-response bias among detained persons, comparing participants who accepted or refused to sign a one-time general informed consent. We used data collected in a cross-sectional study primary designed to evaluate a one-time general informed consent for research. A total of 190 participants were included in the study (response rate = 84.7%). The main outcome was the acceptance to sign the informed consent, used as a proxy to evaluate non-response. We collected sociodemographic variables, health literacy, and self-reported clinical information. A total of 83.2% of the participants signed the informed consent. In the multivariable model after lasso selection and according to the relative bias, the most important predictors were the level of education (OR = 2.13, bias = 20.7%), health insurance status (OR = 2.04, bias = 7.8%), need of another study language (OR = 0.21, bias = 39.4%), health literacy (OR = 2.20, bias = 10.0%), and region of origin (not included in the lasso regression model, bias = 9.2%). Clinical characteristics were not significantly associated with the main outcome and had low relative biases (≤ 2.7%). Refusers were more likely to have social vulnerabilities than consenters, but clinical vulnerabilities were similar in both groups. The non-response bias probably occurred in this prison population. Therefore, efforts should be made to reach this vulnerable population, improve participation in research, and ensure a fair and equitable distribution of research benefits.

Vulnerabilidade e resistência na pandemia de covid-19: por um outro imaginário / Vulnerabiliy and resistance in the covid-19 pandemic: toward an other imagery / Vulnerabiliy and resistance in the covid-19 pandemic: toward an other imagery

O texto propõe-se a refletir sobre a pandemia de covid-19 à luz do problema da vulnerabilidade. Discute-se a pertinência dos diagnósticos sobre a distribuição desigual da vulnerabilidade e as necropolíticas, enquanto chaves compreensivas de nossa realidade histórica. Tensiona-se o argumento de que a epidemia se constituiu enquanto marco histórico de um progresso moral civilizatório. Por fim, insiste-se na vulnerabilidade e no valor renovado da proteção e do amparo aos corpos, enquanto problemas cujo sentido ético depende de suas conversões em políticas e em imaginários de igualdade.

The text proposes a reflection on the covid-19 pandemic in the light of the problem of vulnerability. The relevance of diagnoses on the unequal distribution of vulnerability and necropolitics is discussed, as comprehensive keys to our historical reality. The argument that the epidemic was constituted as a historical landmark of a civilizing moral progress is offered. Finally, the text insists on the vulnerability and renewed value of protecting and supporting bodies, as problems whose ethical meaning depends on their conversion into policies and imageries of equality.

El texto propone reflexionar sobre la pandemia del covid-19 a la luz del problema de la vulnerabilidad. Se discute la relevancia de los diagnósticos sobre la distribución desigual de la vulnerabilidad y la necropolítica, como claves comprensivas de nuestra realidad histórica. Ofertase el argumento de que la epidemia se constituyó como un hito histórico de un progreso moral civilizatorio. Finalmente, insistese en la vulnerabilidad y el valor renovado de los cuerpos protectores y de apoyo, como problemas cuyo significado ético pasa por su conversión en políticas e imaginarios de igualdad.

Ineligibility for and Refusal to Participate in Randomized Controlled Trials That Have Studied Impact on Suicide-Related Outcomes in the United States: A Meta-Analysis.

Objective: Ineligibility for and refusal to participate in randomized controlled trials (RCTs) can potentially lead to unrepresentative study samples and limited generalizability of findings. We examined the rates of exclusion and refusal in RCTs that have studied impact on suicide-related outcomes in the US.Data Sources: PubMed, the Cochrane Library, the Campbell Collaboration Library of Systematic Reviews, CINAHL, PsycINFO, and Education Resources Information Center were searched from January 1990 to May 2020 using the terms (suicide prevention) AND (clinical trial).Study Selection: Of 8,403 studies retrieved, 36 RCTs assessing effectiveness on suicide-related outcomes in youth (≤ 25 years old) conducted in the US were included.Data Extraction: Study-level data were extracted by 2 independent investigators for a random-effects meta-analysis and meta-regression.Results: The study participants (N = 13,264) had a mean (SD) age of 14.87 (1.58) years and were 50% male, 23% African American, and 24% Hispanic. The exclusion rate was 36.4%, while the refusal rate was 25.5%. The exclusion rate was significantly higher in the studies excluding individuals not exceeding specified cutoff points of suicide screening tools (51.2%; adjusted linear coefficient [ß] = 1.30, standard error [SE] = 0.15; P = .041) and individuals not meeting the age or school grade criterion (45.9%; ß = 1.37, SE = 0.13; P = .005).Conclusions: The rates of exclusion and refusal in youth prevention interventions studying impact on suicide-related outcomes were not as high compared to the rates found in other mental and behavioral interventions. While there was strong racial/ethnic group representation in RCTs examining youth suicide-related outcomes, suicide severity and age limited eligibility.

Patient characteristics and refusal to participate in a head and neck cancer intervention trial: experience of two tertiary UK head and neck cancer centres.

INTRODUCTION: Randomised clinical trials are an essential component for robust clinical evaluation. They are expensive to deliver but can fail to achieve the required outcomes. This paper reports details of trial recruitment in a head and neck Patient Concerns Inventory intervention trial from two UK head and neck tertiary centres. MATERIALS AND METHODS: Data were collected for a pragmatic cluster preference randomised control trial with 15 consultants recruiting patients treated with curative intent after a diagnosis of head and neck cancer (all sites, disease stages, treatments). Ethical approval was given to report on those not recruited by the following characteristics: trial site, trial arm, age, sex, tumour site, overall stage, index of multiple deprivation quintile, timeframe. RESULTS: There were 368 patients approached who remained eligible and 80 (22%) declined to participate. Logistic regression suggested that age group (p = 0.008) and index of multiple deprivation quintile group (p = 0.003) were independent predictors of refusal. CONCLUSIONS: Although recruitment to the trial was very good, it raised the issue of lower recruitment in the more deprived older group and lower social economic strata. Innovative ways need to be explored to facilitate the 'hard to reach' group contributing to, and benefiting from, clinical trials.

Pediatric Discharge From the Emergency Department Against Medical Advice.

In this Ethics Rounds we present a conflict regarding discharge planning for a febrile infant in the emergency department. The physician believes discharge would be unsafe and would constitute a discharge against medical advice. The child's mother believes her son has been through an already extensive and painful evaluation and would prefer to monitor her well-appearing son closely at home with a safety plan and a next-day outpatient visit. Commentators assess this case from the perspective of best interest, harm-benefit, conflict management, and nondiscriminatory care principles and prioritize a high-quality informed consent process. They characterize the formalization of discharge against medical advice as problematic. Pediatricians, a pediatric resident, ethicists, an attorney, and mediator provide a range of perspectives to inform ethically justifiable options and conflict resolution practices.

Leave me out: Patients' characteristics and reasons for opting out of a pragmatic clinical trial involving medication adherence.

ABSTRACT: Opt-out procedures are sometimes used instead of standard consent practices to enable patients to exercise their autonomous preferences regarding research participation while reducing patient and researcher burden. However, little is known about the characteristics of patients who opt-out of research and their reasons for doing so. We gathered such information in a large pragmatic clinical trial (PCT) evaluating the effect of theory informed text messages on medication adherence.Eligible patients, identified through electronic health records, were sent information about the study and provided with an opportunity to opt-out. Those opting out were asked to complete a voluntary survey regarding their reasons for doing so. Demographic data were compared among patients opting-out vs those included in the study using chi-squared tests and a log binomial regression model.Of 9046 patients receiving study packets, 906 (10.0%) patients returned opt-out forms. Of those, 451 (49.8%) returned the opt-out survey. Patients who opted out were more likely to be older, white, and nonHispanic than those who were included in the PCT. Survey respondents expressed high levels of trust in their health care providers, research, and system. Nearly half (46.6%) reported concerns about time as a reason to opt-out.In this PCT, 10% of patients receiving packets opted out, with significant differences in age, race, gender, and ethnicity compared to those included. Future trials should further investigate representativeness and reasons patients choose to opt-out of participating in research.

"Rescue" of Nonparticipants in Colorectal Cancer Screening: A Randomized Controlled Trial of Three Noninvasive Test Options.

Few studies have directly targeted nonparticipants in colorectal cancer screening to identify effective engagement strategies. We undertook a randomized controlled trial that targeted nonparticipants in a previous trial of average-risk subjects which compared participation rates for mailed invitations offering a fecal test, a blood test or a choice of either. Nonparticipants (n = 899) were randomized to be offered a kit containing a fecal immunochemical test (FIT), directions on how to arrange a blood DNA test, or the option of doing either. Screening participation was assessed 12 weeks after the offer. To assess the cognitive and attitudinal variables related to participation and invitee choice, invitees were surveyed after 12 weeks, and associations were investigated using multinomial logistic regression. Participation rates were similar between groups (P = 0.88): 12.0% for FIT (35/292), 13.3% for the blood test (39/293), and 13.4% for choice (39/290). Within the choice group, participation was significantly higher with FIT (9.7%, 28/290) compared with the blood test (3.8%, 11/290, P = 0.005). The only variable significantly associated with participation was socioeconomic status when offered FIT, and age when offered choice but there was none when offered the blood test. Survey respondents indicated that convenience, time-saving, comfort, and familiarity were major influences on participation. There was no clear advantage between a fecal test, blood test, or choice of test although, when given a choice, the fecal test was preferred. Differences in variables associated with participation according to invitation strategy warrant consideration when deciding upon an invitation strategy for screening nonparticipants. PREVENTION RELEVANCE: This trial of screening for those at average risk for colorectal cancer targeted past fecal-test nonparticipants and compared participation rates for mailed invitations offering a fecal test, blood test, or choice of either. Although there was no clear advantage between strategies, factors associated with participation differed between each strategy.

La exigencia de la vacunación contra el COVID-19: análisis desde el derecho a la privacidad y libertad de conciencia del trabajador / The requirement of vaccination against COVID-19: analysis from the right to privacy and freedom of conscience of the worker

En el presente trabajo se analiza si es posible que el empleador exija a los trabajadores vacunarse contra el COVID-19 en el marco la obligación de preservar la salud e higiene en el lugar de trabajo.

Parental Factors Associated With the Decision to Participate in a Neonatal Clinical Trial.

Importance: It remains poorly understood how parents decide whether to enroll a child in a neonatal clinical trial. This is particularly true for parents from racial or ethnic minority populations. Understanding factors associated with enrollment decisions may improve recruitment processes for families, increase enrollment rates, and decrease disparities in research participation. Objective: To assess differences in parental factors between parents who enrolled their infant and those who declined enrollment for a neonatal randomized clinical trial. Design, Setting, and Participants: This survey study conducted from July 2017 to October 2019 in 12 US level 3 and 4 neonatal intensive care units included parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and Encephalopathy (HEAL) trial or who were eligible but declined enrollment. Data were analyzed October 2019 through July 2020. Exposure: Parental choice of enrollment in neonatal clinical trial. Main Outcomes and Measures: Percentages and odds ratios (ORs) of parent participation as categorized by demographic characteristics, self-assessment of child's medical condition, study comprehension, and trust in medical researchers. Survey questions were based on the hypothesis that parents who enrolled their infant in HEAL differ from those who declined enrollment across 4 categories: (1) infant characteristics and parental demographic characteristics, (2) perception of infant's illness, (3) study comprehension, and (4) trust in clinicians and researchers. Results: Of a total 387 eligible parents, 269 (69.5%) completed the survey and were included in analysis. This included 183 of 242 (75.6%) of HEAL-enrolled and 86 of 145 (59.3%) of HEAL-declined parents. Parents who enrolled their infant had lower rates of Medicaid participation (74 [41.1%] vs 47 [55.3%]; P = .04) and higher rates of annual income greater than $55 000 (94 [52.8%] vs 30 [37.5%]; P = .03) compared with those who declined. Black parents had lower enrollment rates compared with White parents (OR, 0.35; 95% CI, 0.17-0.73). Parents who reported their infant's medical condition as more serious had higher enrollment rates (OR, 5.7; 95% CI, 2.0-16.3). Parents who enrolled their infant reported higher trust in medical researchers compared with parents who declined (mean [SD] difference, 5.3 [0.3-10.3]). There was no association between study comprehension and enrollment. Conclusions and Relevance: In this study, the following factors were associated with neonatal clinical trial enrollment: demographic characteristics (ie, race/ethnicity, Medicaid status, and reported income), perception of illness, and trust in medical researchers. Future work to confirm these findings and explore the reasons behind them may lead to strategies for better engaging underrepresented groups in neonatal clinical research to reduce enrollment disparities.

Prevalence and Potential Correlates of Family Refusal to Organ Donation for Brain-Dead Declared Patients: A 12-Year Retrospective Screening Study.

BACKGROUND: This study was designed to determine prevalence and potential correlates of family refusal to organ donation for patients declared brain dead thorough a 12-year retrospective data analysis. METHODS: Of 111 cases declared brain dead by our hospital within a 12-year period between 2008 and 2019, a total of 82 potentially brain-dead organ donors were included in this retrospective study. Data on sociodemographic characteristics, length of intensive care unit stay, cause of death, decedent's wishes, interview time, family decision, and reasons for refusal were recorded. RESULTS: The rate of family refusal to organ donation was 51.2% and because of religious concerns (64.3%) in most of cases. The likelihood of family consent to organ donation was significantly higher for an adult vs a child (60.0% vs 25.9%, P = .004) and for a schooler and adolescent age vs a younger child (55.6 vs 22.5%, P = .004). Patients who were declared brain dead after nontraumatic intracranial hemorrhage (60.4%) vs encephalitis (18.2%) had higher rates of family consent to organ donation (P = .023). CONCLUSIONS: In conclusion, our findings revealed family refusal to organ donation in at least half of cases and higher likelihood of family consent to organ donation depending on age of patient (adult vs children) and cause of death (brain injury vs encephalitis). The religious concerns and distrust in the health care system were the 2 major causes of family refusal, whereas no significant difference was noted across different family refusal reasons in terms of sociodemographic factors, length of intensive care unit stay, awareness of decedent's wishes, or time of family interview.

The motivations, barriers, and sociodemographic characteristics of healthy Chinese volunteers in phase I research.

PURPOSE: To describe the motivations, barriers, and sociodemographic characteristics of healthy Chinese volunteers in phase I research and to demonstrate the factors influencing their willingness to participate in subsequent trials. METHODS: Healthy subjects who participated in seven phase I trials at two centres were invited to participate in the cross-sectional survey at discharge by anonymously and voluntarily completing the self-administered questionnaire. RESULTS: From 442 subjects asked to complete the questionnaire, a response rate of 94.8% (419) was obtained, and 72.8% of the respondents had participated in a mean of 2.0 ± 1.3 previous studies. Over 90% of the subjects indicated that the main motivations to participate trials were to help more people, to contribute to scientific research, and to obtain money. The top 5 barriers were time inconvenience, advertisement sources, potential risks associated with the drug, privacy, and the route of drug administration. Nearly half (49.6%) of the subjects were willing to participate in the next trial. The factors impacting the willingness of the subjects to participate in subsequent trials were gender, screening frequency, enrolment frequency, level of understanding of the research, two motivating factors (to make money and receive a free check-up), and ten barriers (e.g. risk, distance, living conditions, and trust). CONCLUSIONS: The majority of healthy Chinese subjects were young, were less well educated, had low income levels, and had poor medical insurance coverage. Given the multiple sources of motivation and complex barriers to trial participation, investigators and recruitment staff should consider ethics aspects to guarantee volunteer safety and well-being.

Characteristics Associated With Consent and Reasons for Declining in a Randomized Trial in Pregnancy.

OBJECTIVE: To evaluate the maternal characteristics associated with consent to a randomized trial of labor induction in pregnancy. METHODS: This is a secondary analysis of low-risk nulliparous women randomized to induction of labor at 39 weeks or expectant management. During the trial, the Data and Safety Monitoring Committee requested additional fields on the screening log, which already included race and ethnicity: maternal age, type of insurance, and the reason for declining consent if declined. RESULTS: From August 2016 (start of additional data collection) to August 2017, 1,965 (28%) of the 7,112 eligible women consented to the trial. Consent was more likely for Black women (41%, adjusted odds ratio [aOR] 1.47, 95% CI 1.24-1.74), and less likely for Asian women (15%, aOR 0.64, 95% CI 0.48-0.84), compared with White women (24%). Women without private insurance were more likely to consent (38%, aOR 1.55, 95% CI 1.34-1.79), compared with those with private insurance (22%). Younger women were also more likely to consent. Among eligible women who declined participation and provided a reason (68%), preference to be expectantly managed (85%) was most common, a response more common in Asian women (aOR 1.75, 95% CI 1.31-2.33) and less common in women without private insurance (aOR 0.60, 95% CI 0.51-0.70). Not wanting to participate in research was more common in Asian women (aOR 2.41, 95% CI 1.44-4.03). Declining consent because family or friends objected was more common in Asian women (aOR 2.51, 95% CI 1.27-4.95) and women without private insurance (aOR 1.68, 95% CI 1.10-2.59). CONCLUSION: Frequency of consent and reasons for declining consent were associated with age, type of insurance, and race and ethnicity. These findings should be considered when developing recruitment strategies that promote diverse participant representation. CLINICAL TRIAL REGISTRATION: ClinialTrials.gov, NCT01990612.

Decision-Making And Selection Bias in Four Observational Studies on Duchenne and Becker Muscular Dystrophy.

BACKGROUND: Natural history data are essential for trial design in Duchenne (DMD) and Becker muscular dystrophy (BMD), but recruitment for observational studies can be challenging. OBJECTIVE: We reviewed reasons why patients or caregivers declined participation, and compared characteristics of participants and non-participants to assess possible selection bias in four observational studies, three on DMD and one on BMD. METHODS: Three pediatric DMD studies focused on cross-sectional cognitive function and brain MRI (DMDbrain, n = 35 and DMDperfusion, n = 12), and on longitudinal upper extremity function and muscle MRI (DMDarm, n = 22). One adult BMD study assessed longitudinal functioning (n = 36). Considerations for non-participation were retrospectively reviewed from screening logs. Age, travel-time, DMD gene mutations and age at loss of ambulation (DMDarm and BMD study only), of participants and non-participants were derived from the Dutch Dystrophinopathy Database and compared using nonparametric tests (p < 0.05). RESULTS: The perceived burden of the protocol (38.2%), use of MRI (30.4%), and travel-time to the study site (19.1%) were the most frequently reported considerations for non-participation. Only few patients reported lack of personal gain (0.0- 5.9%). Overall, participating patients were representative for the studied sub-populations, except for a younger age of DMDarm study participants and a complete lack of participants with a mutation beyond exon 63. CONCLUSION: Optimizing patient involvement in protocol design, improving MRI experiences, and integrating research into clinics are important factors to decrease burden and facilitate participation. Nationwide registries are essential to compare participants and non-participants and ensure representative observational research. Specific effort is needed to include patients with distal mutations in cognitive studies.

Non-response in a national health survey in Germany: An intersectionality-informed multilevel analysis of individual heterogeneity and discriminatory accuracy.

BACKGROUND: Dimensions of social location such as socioeconomic position or sex/gender are often associated with low response rates in epidemiological studies. We applied an intersectionality-informed approach to analyze non-response among population strata defined by combinations of multiple dimensions of social location and subjective health in a health survey in Germany. METHODS: We used data from the cross-sectional sample of the German Health Interview and Examination Survey for Adults (DEGS1) conducted between 2008 and 2011. Information about non-responders was available from a mailed non-responder questionnaire. Intersectional strata were constructed by combining all categories of age, sex/gender, marital status, and level of education in scenario 1. Subjective health was additionally used to construct intersectional strata in scenario 2. We applied multilevel analysis of individual heterogeneity and discriminatory accuracy (MAIHDA) to calculate measures of discriminatory accuracy, proportions of non-responders among intersectional strata, as well as stratum-specific total interaction effects (intersectional effects). Markov chain Monte Carlo methods were used to estimate multilevel logistic regression models. RESULTS: Data was available for 6,534 individuals of whom 36% were non-responders. In scenario 2, we found weak discriminatory accuracy (variance partition coefficient = 3.6%) of intersectional strata, while predicted proportions of non-response ranged from 20.6% (95% credible interval (CI) 17.0%-24.9%) to 57.5% (95% CI 48.8%-66.5%) among intersectional strata. No evidence for intersectional effects was found. These results did not differ substantially between scenarios 1 and 2. CONCLUSIONS: MAIHDA revealed that proportions of non-response varied widely between intersectional strata. However, poor discriminatory accuracy of intersectional strata and no evidence for intersectional effects indicate that there is no justification to exclusively target specific intersectional strata in order to increase response, but that a combination of targeted and population-based measures might be appropriate to achieve more equal representation.

When patients refuse COVID-19 testing, quarantine, and social distancing in inpatient psychiatry: clinical and ethical challenges.

The COVID-19 pandemic has introduced new ethical challenges in the care of patients with serious psychiatric illness who require inpatient treatment and who may have beeen exposed to COVID-19 or have mild to moderate COVID-19 but refuse testing and adherence to infection prevention protocols. Such situations increase the risk of infection to other patients and staff on psychiatric inpatient units. We discuss medical and ethical considerations for navigating this dilemma and offer a set of policy recommendations.

Refusal of viral testing during the SARS-CoV-2 pandemic.

Widespread testing for the respiratory syndrome coronavirus-2 (SARS-CoV-2) will represent an important part of any strategy designed to safely reopen societies from lockdown. Healthcare settings have the potential to become reservoirs of infectivity, and therefore many hospital trusts are beginning to carry out routine screening of staff and patients. This could promote the effective cohorting of patients and reduce the rate of nosocomial infection. However, for various reasons, some individuals may refuse this testing. Here we highlight this as an emergent ethicolegal issue which we expect to become increasingly relevant as testing becomes ubiquitous. We explore this position from an ethical and legal perspective, determining whether refusal of testing is acceptable under UK law. Individual patients refusing testing could undermine a hospital's testing strategy; therefore clinicians and policy makers must prospectively determine the best course of action if this were to occur.