Using Wearable Digital Devices to Screen Children for Mental Health Conditions: Ethical Promises and Challenges.

In response to a burgeoning pediatric mental health epidemic, recent guidelines have instructed pediatricians to regularly screen their patients for mental health disorders with consistency and standardization. Yet, gold-standard screening surveys to evaluate mental health problems in children typically rely solely on reports given by caregivers, who tend to unintentionally under-report, and in some cases over-report, child symptomology. Digital phenotype screening tools (DPSTs), currently being developed in research settings, may help overcome reporting bias by providing objective measures of physiology and behavior to supplement child mental health screening. Prior to their implementation in pediatric practice, however, the ethical dimensions of DPSTs should be explored. Herein, we consider some promises and challenges of DPSTs under three broad categories: accuracy and bias, privacy, and accessibility and implementation. We find that DPSTs have demonstrated accuracy, may eliminate concerns regarding under- and over-reporting, and may be more accessible than gold-standard surveys. However, we also find that if DPSTs are not responsibly developed and deployed, they may be biased, raise privacy concerns, and be cost-prohibitive. To counteract these potential shortcomings, we identify ways to support the responsible and ethical development of DPSTs for clinical practice to improve mental health screening in children.

Sequencing projects will screen 200,000 newborns for disease.

U.K. and New York City efforts face cost and ethical issues.

Ethics of Implementing US Preventive Services Task Force Recommendations for Childhood Obesity.

Childhood obesity represents a serious and growing concern for the United States. Its negative consequences for health and well-being can be far-reaching, devastating, and intergenerational. In 2017, the US Preventive Services Task Force (USPSTF) issued a grade B recommendation for screening children and adolescents for obesity and offering or referring to comprehensive, intensive behavioral interventions as indicated. However, many communities in the United States have limited access to such interventions. The USPSTF's mission is to review and grade research evidence for clinical preventive services and does not include cost or population-based operationalization and implementation logistics considerations for its recommendations. Yet implementing recommendations without considering cost and operationalization may lead to equity and access challenges. These are essential considerations, but oversight of the implementation of these recommendations is not standardized or assigned to any one agency or organization. As such, a central ethical feature inherent to the implementation of USPSTF recommendations calls for stakeholder collaborations to take on the next step beyond the establishment of evidence-based recommendations: to ensure the ethical application of such guidelines across diverse populations. Furthermore, the screening-intervention relationship inherent to this USPSTF recommendation raises ethical concerns regarding US societal norms surrounding obesity, particularly when contrasted against other screening-intervention modalities. More efforts, such as increased incentives or expansion of clinical services in low-resource areas, should be taken to facilitate this recommended intervention by expanding access to childhood obesity interventions to fulfill ethical responsibilities to equity and to ensure the right to open futures for children.

Ethical issues in managing the COVID-19 pandemic.

The COVID-19 pandemic has had an immense and worldwide impact. In light of future pandemics or subsequent waves of COVID-19 it is crucial to focus on the ethical issues that were and still are raised in this COVID-19 crisis. In this paper, we look at issues that are raised in the testing and tracing of patients with COVID-19. We do this by highlighting and expanding on an approach suggested by Fineberg that could serve as a public health approach. In this way, we highlight several ethical issues. As regards testing, questions are raised such as whether it is ethical to use less reliable tests in order to increase testing capacity or minimize harm for patients. Another issue is how wide testing should be and whether selective testing is in accordance with principles of social justice. Patients who have recovered from COVID-19 might have some degree of immunity but attributing certain 'immunopriviliges' raises ethical questions. The use of various tracing methodologies (mobile apps or databases and trained tracers) raised evident questions of social justice and privacy. We argue why it is key to always uphold a test of proportionality where a fair balance must be sought.

Stakeholder views on opportunistic genomic screening in the Netherlands: a qualitative study.

Genome sequencing can be used to actively search for genetic variants unrelated to the initial clinical question. While such 'opportunistic genomic screening' (OGS) has been proposed in the USA, a European discussion on the ethics of OGS is only starting. Should testing for selected 'secondary findings' be offered to patients who need genetic sequencing? Using focus groups and interviews, we explored views on OGS in adults and minors from three perspectives: policy experts (n = 9), health professionals (n = 8) and patient representatives (n = 7). A thematic approach was used to analyze the data. There was consensus that OGS should be evaluated in terms of the classical 'screening' framework, rather than as a form of 'good patient care'. Accordingly, stakeholders agreed that professionals do not have a 'fiduciary duty' to look for secondary findings. Adding screening to clinical care was only conceivable with the patient's informed consent. In general, stakeholders were reluctant towards OGS. Arguments for regarding OGS being premature included lack of evidence regarding its clinical utility, also in view of uncertainties regarding general population penetrance, and concerns about both its psychosocial impact and respect for autonomy. All groups agreed that OGS means unequal access, which was seen as problematic. Yet, despite their concerns, stakeholders felt that offering screening for certain actionable pathogenic variants with known high penetrance could potentially be valuable in certain contexts for both adults and minors. Pharmacogenetic variants were regarded as a category by itself, for which OGS could potentially be beneficial.

OCCURRENCE OF UNUSUAL HAEMOGLOBINOPATHIES IN BALOCHISTAN: HB SD AND HB SE - PRESENTATION WITH OSTEOMYELITIS.

OBJECTIVE: To describe two cases of unusual variants of sickle cell disease. CASE DESCRIPTION: We present two cases of sickle cell disease variants (haemoglobinopathies), from unrelated families, in the state of Balochistan (Pakistan). One was diagnosed with sickle cell disease in the haemoglobin electrophoresis, whereas the other was diagnosed with sickle cell SE disease. Both were diagnosed based on the presentation of osteomyelitis. COMMENTS: Haemoglobin SD disease (Hb SD) and haemoglobin SE disease (Hb SE) are rare haemoglobinopathies in the world. The lack of available literature suggests that both are variants of sickle cell disease (SCD), with heterogeneous nature. The prevalence of sickle cell disease with compound heterozygotes was found at a variable frequency in the population of the Asian Southeast. The frequency of osteomyelitis in SCD is 12 to 18%, but its occurrence among variant haemoglobinopathies is little reported. Both reported cases presented with osteomyelitis as a characteristic of the disease presentation.

Occurrence of unusual haemoglobinopathies in balochistan: hb sd and hb se - presentation with osteomyelitis / Ocorrência de hemoglobinopatias incomuns no baluchistão: hb sd e hb se - apresentação com osteomielite

ABSTRACT Objective: To describe two cases of unusual variants of sickle cell disease. Case description: We present two cases of sickle cell disease variants (haemoglobinopathies), from unrelated families, in the state of Balochistan (Pakistan). One was diagnosed with sickle cell disease in the haemoglobin electrophoresis, whereas the other was diagnosed with sickle cell SE disease. Both were diagnosed based on the presentation of osteomyelitis. Comments: Haemoglobin SD disease (Hb SD) and haemoglobin SE disease (Hb SE) are rare haemoglobinopathies in the world. The lack of available literature suggests that both are variants of sickle cell disease (SCD), with heterogeneous nature. The prevalence of sickle cell disease with compound heterozygotes was found at a variable frequency in the population of the Asian Southeast. The frequency of osteomyelitis in SCD is 12 to 18%, but its occurrence among variant haemoglobinopathies is little reported. Both reported cases presented with osteomyelitis as a characteristic of the disease presentation.

RESUMO Objetivo: Descrever dois casos de variantes raras da hemoglobinopatia falciforme. Descrição do caso: Apresentamos aqui dois casos de hemoglobinopatias variantes das células falciformes, de famílias não relacionadas, no estado do Baluchistão (Paquistão), sendo um diagnosticado como doença da hemoglobina SD na eletroforese de hemoglobina, enquanto o outro com doença da hemoglobina SE. Ambos foram diagnosticados a partir da apresentação de osteomielite. Comentários: Hemoglobina SD (Hb SD) e hemoglobina SE (Hb SE) são hemoglobinopatias raras no mundo. A escassez de literatura disponível sugere que ambas são variantes da doença falciforme (DF) com natureza heterogênea. A prevalência de hemoglobinopatia falciforme com heterozigosidade composta foi encontrada com frequência variável na população do sudeste asiático. A frequência de osteomielite na DF é de 12 a 18%, mas sua ocorrência entre as hemoglobinopatias falciformes variantes é pouco relatada. Os dois casos reportados apresentaram osteomielite como característica de apresentação da doença.

Ethical Challenges and Opportunities Associated With the Ability to Perform Medical Screening From Interactions With Search Engines: Viewpoint.

Recent research has shown the efficacy of screening for serious medical conditions from data collected while people interact with online services. In particular, queries to search engines and the interactions with them were shown to be advantageous for screening a range of conditions including diabetes, several forms of cancer, eating disorders, and depression. These screening abilities offer unique advantages in that they can serve a broad strata of the society, including people in underserved populations and in countries with poor access to medical services. However, these advantages need to be balanced against the potential harm to privacy, autonomy, and nonmaleficence, which are recognized as the cornerstones of ethical medical care. Here, we discuss these opportunities and challenges, both when collecting data to develop online screening services and when deploying them. We offer several solutions that balance the advantages of these services with the ethical challenges they pose.

'I don't want anyone to know': Experiences of obtaining access to HIV testing by Eastern European, non-European Union sex workers in Amsterdam, the Netherlands.

Historically, the Netherlands has hosted a large number of migrant sex workers. Since sex work is considered a legal profession it might serve as an example of better access to health services, including HIV testing, at least for those working within the legal framework. However, migrant sex workers, especially non-European Union (EU) nationals, might not be eligible to register for official employment and thus face obstacles in obtaining access to health services, becoming essentially invisible. This study examined context-specific vulnerabilities of migrant female sex workers (FSWs) from Belarus, Moldova, Russia and Ukraine, whether and how they have access to HIV testing compared to other EE, non-EU migrant FSWs in Amsterdam in the Netherlands. We conducted a multi-stakeholder perspective study from November 2015 to September 2017 in Amsterdam. The study comprised 1) semi-structured interviews with key stakeholders (N = 19); 2) in-depth interviews with Eastern European, non-EU migrant FSWs (N = 5) and field observations of the escort agency working with them; and 3) in-depth interviews with key stakeholders (N = 12). We found six key barriers to HIV testing: 1) migration and sex-work policies; 2) stigma, including self-stigmatization; 3) lack of trust in healthcare providers or social workers; 4) low levels of Dutch or English languages; 5) negative experience in accessing healthcare services in the home country; and 6) low perceived risk and HIV-related knowledge. Having a family and children, social support and working at the licensed sex-work venues might facilitate HIV testing. However, Internet-based sex workers remain invisible in the sex-work industry. Our findings indicate the importance of addressing women's diverse experiences, shaped by intrapersonal, interpersonal, community, network and policy-level factors, with stigma being at the core. We call for the scaling up of outreach interventions focusing on FSWs and, in particular, migrant FSWs working online.

Assessment of Clinician Decision-making on Cancer Screening Cessation in Older Adults With Limited Life Expectancy.

Importance: Despite clinical practice guidelines recommending against routine cancer screening in older adults with limited life expectancy, older adults are still frequently screened for breast, colorectal, and prostate cancers. Objective: To examine primary care clinicians' decision-making on stopping breast, colorectal, or prostate cancer screening in older adults with limited life expectancy. Design, Setting, and Participants: In qualitative interviews coupled with medical record-stimulated recall, clinicians from 17 academic and community clinics affiliated with a large health system were asked how they came to specific cancer screening decisions in 2 or 3 of their older patients with less than 10-year of estimated life expectancy, including patients with and without recent screening. Patients were surveyed by telephone. Data collection occurred between October 2018 and May 2019. Main Outcomes and Measures: Clinician interviews were audio-recorded and transcribed verbatim. Transcripts were analyzed with qualitative content analysis to identify major themes. Patient surveys assessed perception of cancer screening decisions, importance of clinician recommendation, and willingness to stop screening. Results: Twenty-five primary care clinicians (mean [SD] age, 47.1 [9.7] years; 14 female [56%]) discussed 53 patients during medical record-stimulated recall, ranging from 2 to 3 patients per clinician; 46 patients and 1 caregiver (mean [SD] age 74.9 [5.4]; 31 female [66%]) participated in the survey. Clinician interviews revealed 5 major themes: (1) cancer screening decisions were not always conscious, deliberate decisions; (2) electronic medical record alerts were connected with less deliberate decision-making; (3) cancer screening was not binary and clinicians often considered other options to scale back screening without actually stopping; (4) in addition to patient characteristics, clinicians were influenced by patient request and anecdotal experiences; and (5) influences outside of the primary care clinician-patient dyad were important, such as from specialists and patients' family or friends. Patient surveys asked approximately 64 cancer screening decisions of 47 patients. Patients did not recall approximately half (31 of 64) of their cancer screening decisions. Among those with recent screening, the mean score for willingness to stop screening was 3.2 (95% CI 2.5-3.9) on a 5-point Likert scale (with 1 indicating "extremely unlikely" and 5 indicating "extremely likely"). In most screening decisions that involved specialists (13 of 16), patients valued specialists' recommendations over those of primary care clinicians. Conclusions and Relevance: Cancer screening decision-making is complex. Study findings suggest that strategies that facilitate more deliberate decision-making may be important in cancer screening of older adults with limited life expectancy.

Autonomy in HIV testing: a call for a rethink of personal autonomy in the HIV response in sub-Saharan Africa.

The author reviews various conceptions of autonomy to show that humans are actually not autonomous, strictly speaking. He argues for a need to rethink the personal autonomy approaches to HIV testing in sub-Saharan Africa (SSA) countries. HIV/AIDS has remained a leading cause of disease burden in SSA. It is important to bring this disease burden under control, especially given the availability of current effective antiretroviral regimens in low- and middle-income countries. In most SSA countries the ethic or value of personal autonomy or self-determination is promoted as primary in HIV testing decision-making. SSA policymakers have an ontological and moral duty to adopt HIV testing policies that reflect human and medical realities, relationships, local contexts, and respect human rights for both individuals and others who are affected by HIV in society. Without rethinking the value of autonomy in HIV testing decision-making, the article cautions that attainment of the Sustainable Development Goal (SDG) 3 and the UNAIDS fast-track strategy that explicitly call to end the epidemic by 2030 will not be feasible for SSA.