The impact of commercial health datasets on medical research and health-care algorithms.

As the health-care industry emerges into a new era of digital health driven by cloud data storage, distributed computing, and machine learning, health-care data have become a premium commodity with value for private and public entities. Current frameworks of health data collection and distribution, whether from industry, academia, or government institutions, are imperfect and do not allow researchers to leverage the full potential of downstream analytical efforts. In this Health Policy paper, we review the current landscape of commercial health data vendors, with special emphasis on the sources of their data, challenges associated with data reproducibility and generalisability, and ethical considerations for data vending. We argue for sustainable approaches to curating open-source health data to enable global populations to be included in the biomedical research community. However, to fully implement these approaches, key stakeholders should come together to make health-care datasets increasingly accessible, inclusive, and representative, while balancing the privacy and rights of individuals whose data are being collected.

Phthalates in children toys available in Malaysian market: Quantification and potential human health risk.

In Malaysia, inexpensive toys are sold in various urban and rural shops. Although safety regulations for toys are available in Malaysia there are limited reports about the chemicals in toys. Thus, this study aimed to assess the levels of phthalates (bis-[2-ethylhexyl] phthalate [DEHP], diethyl phthalate [DEP], diisobutyl phthalate [DiBP] and dibutyl phthalate [DBP]) in inexpensive toys sold at local markets in Kuala Lumpur (Malaysia) and its health risks to children. All 30 toys analysed exceeded the European Union limit (0.1 % by mass) indicating that the phthalate used as plasticizers is still prominent in toys. Bis-[2-ethylhexyl] phthalate (DEHP) was the highest detected phthalate in toy sample which was manufactured in Malaysia and sold without Malaysian Conformity Mark. Significant association was found between phthalate levels and country, indicating a need to monitor and raise public awareness about potential toxic chemicals in inexpensive toys and children's products. There are few inexpensive toys that have a hazard index value of more than one, which is associated with developmental toxicity and causes developmental effects in children. Given the severity and complexity of these toys to children health, there is a need for regular monitoring and effective enforcements to develop an acceptable baseline level of children toys products manufactured in or imported to Malaysia. Furthermore, risk management efforts should also include all the stakeholders involved in toy production, policy makers as well as consumers to ensure only toy products with proper labels being sole and purchased.

Misinformation, chiropractic, and the COVID-19 pandemic.

BACKGROUND: In March 2020, the World Health Organization elevated the coronavirus disease (COVID-19) epidemic to a pandemic and called for urgent and aggressive action worldwide. Public health experts have communicated clear and emphatic strategies to prevent the spread of COVID-19. Hygiene rules and social distancing practices have been implemented by entire populations, including 'stay-at-home' orders in many countries. The long-term health and economic consequences of the COVID-19 pandemic are not yet known. MAIN TEXT: During this time of crisis, some chiropractors made claims on social media that chiropractic treatment can prevent or impact COVID-19. The rationale for these claims is that spinal manipulation can impact the nervous system and thus improve immunity. These beliefs often stem from nineteenth-century chiropractic concepts. We are aware of no clinically relevant scientific evidence to support such statements. We explored the internet and social media to collect examples of misinformation from Europe, North America, Australia and New Zealand regarding the impact of chiropractic treatment on immune function. We discuss the potential harm resulting from these claims and explore the role of chiropractors, teaching institutions, accrediting agencies, and legislative bodies. CONCLUSIONS: Members of the chiropractic profession share a collective responsibility to act in the best interests of patients and public health. We hope that all chiropractic stakeholders will view the COVID-19 pandemic as a call to action to eliminate the unethical and potentially dangerous claims made by chiropractors who practise outside the boundaries of scientific evidence.

[Risk of medicines in pregnancy: a problem of knowledge transfer with ethical implications]. / Riesgo de medicamentos en el embarazo: un problema de transferencia del conocimiento con repercusiones éticas.

Drug use in pregnancy is essential and beneficial, but it is needed to check their safety. Available scientific evidence is poor and difficult to interpret. Risk classifications (FDA, ADEC) have shown to be too simple and categorical; they lead to inaccurate perceptions of risk and unfortunate decisions, such as interrumption of medication, or abortion. This has become clear with antidepressants or the antiretroviral efavirenz. Although abortion is not justified, misinformation contributes even more to the problem. Information tends to obviate that not every risk in pregnancy is teratogenic, that the existence of risk does not imply high probability, and that the nature and probability of the risk vary according to the stage.

Current status of postnatal depression smartphone applications available on application stores: an information quality analysis.

OBJECTIVES: It is the aim of the current research to identify some common functionalities of postnatal application, and to determine the quality of the information content of postnatal depression application using validated scales that have been applied for applications in other specialties. SETTINGS AND PARTICIPANTS: To determine the information quality of the postnatal depression smartphone applications, the two most widely used smartphone application stores, namely Apple iTunes as well as Google Android Play store, were searched between 20May and 31 May. No participants were involved. The inclusion criteria for the application were that it must have been searchable using the keywords 'postnatal', 'pregnancy', 'perinatal', 'postpartum' and 'depression', and must be in English language. INTERVENTION: The Silberg Scale was used in the assessment of the information quality of the smartphone applications. PRIMARY AND SECONDARY OUTCOMES MEASURE: The information quality score was the primary outcome measure. RESULTS: Our current results highlighted that while there is currently a myriad of applications, only 14 applications are specifically focused on postnatal depression. In addition, the majority of the currently available applications on the store have only disclosed their last date of modification as well as ownership. There remain very limited disclosures about the information of the authors, as well as the references for the information included in the application itself. The average score for the Silberg Scale for the postnatal applications we have analysed is 3.0. CONCLUSIONS: There remains a need for healthcare professionals and developers to jointly conceptualise new applications with better information quality and evidence base.

[Organisational challenges of community information offices for the elderly in Switzerland : A qualitative study with ethical reflections]. / Strukturelle Herausforderungen kommunaler Altersstellen in der Schweiz : Eine qualitative Studie mit ethischer Reflexion.

BACKGROUND: Current Swiss politics concerning age and ageing are orientated towards the principle "out-patient before in-patient". As part of new regulations, in 2011 all communities were required to set up information offices to answer questions about out-patient and in-patient care. OBJECTIVES: The aim of this qualitative study was to analyse in which form and under which conditions such information offices are run. METHODS: A qualitative study was conducted which consisted of semistructured interviews with managers of information offices. They were analysed using qualitative content analysis. RESULTS: The analysis shows that on the one hand the information offices have the potential to serve an important role in the communities and that they have a highly complex, demanding and responsible function. On the other hand the results illustrate that in organisational respects the situation is highly heterogeneous and unregulated. CONCLUSION: For the running of the information offices, there is need for action such as the definition of general framework, quality standards, qualifications and values profiles, objectives, mission, responsibility and legitimation, instruments for networking and cooperations.

Emerging ethical issues in digital health information.

The problems of poor or biased information and of misleading health and well-being advice on the Internet have been extensively documented. The recent decision by the Internet Corporation for Assigned Names and Numbers to authorize a large number of new generic, top-level domains, including some with a clear connection to health or healthcare, presents an opportunity to bring some order to this chaotic situation. In the case of the most general of these domains, ".health," experts advance a compelling argument in favor of some degree of content oversight and control. On the opposing side, advocates for an unrestricted and open Internet counter that this taken-for-granted principle is too valuable to be compromised, and that, once lost, it may never be recovered. We advance and provide evidence for a proposal to bridge the credibility gap in online health information by providing provenance information for websites in the .health domain.

Representations of disability and normality in rehabilitation technology promotional materials.

PURPOSE: To explore the ways in which promotional materials for two rehabilitation technologies reproduce commonly held perspectives about disability and rehabilitation. METHOD: Our analysis was informed by critical disability studies using techniques from discourse analysis to examine texts (words and images) and their relation to social practices and power. Using this approach, promotional materials for (a) hearing aid and (b) robotic gait training technologies were interrogated using three central questions: (1) Who are represented? (2) What is promised? and (3) Who has authority? RESULTS: Messages of normalization pervaded representations of disabled children and their families, and the promises offered by the technologies. The latter included efficiency and effectiveness, progress and improvement, success and inclusion, and opportunities for a normal life. CONCLUSIONS: Normalization discourses construct childhood disability through texts and images. These discourses reinforce pervasive negative messages about disability that are taken up by children and families and have ethical implications for clinical practice. Rehabilitation has largely focused on "fixing" the individual, whereas broadening the clinical gaze to the social dimensions of disablement may lead to a more sensitive and informed approach within family-clinician discussions surrounding these advanced technologies and the use they make of promotional materials. Implications for Rehabilitation Awareness of the potential effects of implicit and explicit messages about disability in promotional materials may lead to a more sensitive and informed approach within family-clinician discussions surrounding rehabilitation technologies. In practice, it is important for rehabilitation professionals to remember that parents' and children's values and beliefs are shaped over time, and parents' and professionals' perspectives on disability strongly influence how disabled children internalize what disability means to them.

Erectile dysfunction and the internet: drug company manipulation of public and professional opinion.

Given that the Internet is now a major source of information regarding health and mental health problems, and that it is in the interest of the pharmaceutical industry to influence public and professional opinion, this study evaluated 70 websites about erectile dysfunction. The 31 drug company-funded websites (44%) were, compared with the 39 websites that are not industry funded, significantly more biased toward biological factors in general, and toward medication in particular (p < .01). The high proportion of websites that are industry sponsored, and the bias of those websites, confirms previous studies on depression, posttraumatic stress disorder, schizophrenia, and attention deficit hyperactivity disorder, and demonstrates that drug companies are using their financial might to manipulate public and professional opinion on the Internet.

Paediatric cardiac catheterization: an information sheet.

The need to inform patients using validated scientific data is acknowledged internationally. The obligation to inform patients is based on a fundamental principle of French law: the principle of the unavailability of the human body. Before engaging in diagnostic or therapeutic strategies such as paediatric cardiac catheterization, the healthcare professional must explain the disease, the advantages and drawbacks of each treatment strategy and their foreseeable benefit/risk ratio in order to help older children and their parents come to a decision. To obtain this required consent and before the care is provided, the infant and their legal representative must have received clear, accurate and understandable information. An information sheet cannot substitute for verbal information. Guidelines for good practices on the delivery of information have been established by the Health Authorities and officially recognized in a decree from the Ministry of Health. These documents allow professionals to draft a written information document for patients and healthcare users. This document must help the patient to take part in decisions that concern them. The law of 4th March 2002 regarding the rights of patients and the quality of the healthcare system states that 'in cases of litigation, it is the responsibility of the professional or the healthcare establishment to provide proof that the information was given to the person concerned in the conditions set out in the present article. This proof can be brought by any means'.

Ethical and epistemic issues in direct-to-consumer drug advertising: where is patient agency?

Arguments for and against direct-to-consumer drug advertising (DTCA) center on two issues: (1) the epistemic effects on patients through access to information provided by the ads; and (2) the effects of such information on patients' abilities to make good choices in the healthcare marketplace. Advocates argue that DTCA provides useful information for patients as consumers, including information connecting symptoms to particular medical conditions, information about new drug therapies for those conditions. Opponents of DTCA point out substantial omissions in information provided by the ads and argue that the framing of the ads may mislead patients about the indications, uses, and effectiveness of the drugs advertised. They also suggest that DTCA has a number of potentially negative effects on the doctor-patient relationship. The standard arguments appear to assume a simplistic correlation-more information means more agency for patients. However, empirical studies on medical decision making suggest that this relationship is much more complex and nuanced. I examine recent research on ways in which patients are vulnerable with respect to DTCA. In order to address the complex issues of information acquisition and consumer decision-making in the health care marketplace, the focus should not be simply on what information patients need in order to make medical decisions, but also on the conditions under which patients actually are able to make medical decisions requiring complex medication information. This requires examining both the cognitive limitations of patients with respect to drug information and investigating patients' preferences and needs in a variety of medical contexts.

Professionalism: challenges for dentistry in the future.

While countries varies significantly in the financing of dental care, they are much more alike in the delivery of dentistry. Dental care is principally provided in dental offices and clinics that are independent business entities whose business leaders are most often the dentists themselves. However society expects from dentists a level of professionalism (i.e. habitually acting ethically, both in terms of competence and conduct) in contrast to the methods and motivations of the marketplace. This is why the single most important challenge of dental professional ethics continues to be giving proper priority to patients' well being and building ethically correct decision-making relationships with patients while, at the same time, trying to maintain a successful business operation. If we look into dentistry's future, the centrality of this aspect of professional ethics is not likely to change, although the ways in which dentists might violate this trust will probably multiple as funding mechanisms become increasingly complex. It is important that dentists reflect with fresh eyes on their ethical commitments. One challenge is the increased availability of oral health information to the public and the fact that so many people are uncritical of the accuracy of information in the media and on the web. A second is the increase in the amount of health care advertising in many societies. A third is the growth of aesthetic dentistry that differs from standard oral health care in important and ethically significant ways. The fourth is insurance that frequently complicates the explanation of a patient's treatment alternatives and often brings a third party into the treatment decision relationship. The ethical challenges of each of these factors will be considered and ultimately tying it to the central theme of dental professionalism.