The European Union Data Protection Regulation will have profound implications for public health, health services research and statistics in Europe. The EU Commission's Proposal was a breakthrough in balancing privacy rights and rights to health and healthcare. The European Parliament, however, has proposed extensive amendments. This paper reviews the amendments proposed by the European Parliament Committee on Civil Liberties, Justice and Home Affairs and their implications for health research and statistics. The amendments eliminate most innovations brought by the (...) Proposal. Notably, derogation to the general prohibition of processing sensitive data shall be allowed for public interests such as the management of healthcare services, but not health research, monitoring, surveillance and governance. The processing of personal health data for historical, statistical or scientific purposes shall be allowed only with the consent of the data subject or if the processing serves an exceptionally high public interest, cannot be performed otherwise and is legally authorised. Research, be it academic, government, corporate or market research, falls under the same rule. The proposed amendments will make difficult or render impossible research and statistics involving the linkage and analysis of the wealth of data from clinical, administrative, insurance and survey sources, which have contributed to improving health outcomes and health systems performance and governance; and may illegitimise efforts that have been made in some European countries to enable privacy-respectful data use for research and statistical purposes. If the amendments stand as written, the right to privacy is likely to override the right to health and healthcare in Europe. (shrink)

Volume 24, Issue 10, October 2024, Page 101-103.

Volume 24, Issue 10, October 2024, Page 101-103.

We explore how principles predicting the success of a medical information commons advantaged or disadvantaged three MIC initiatives in three Canadian provinces. Our MIC case examples demonstrate that practices and policies to promote access to and use of health information can help improve individual healthcare and inform a learning health system. MICs were constrained by heterogenous health information protection laws across jurisdictions and risk-averse institutional cultures. A networked approach to MICs would unlock even more potential for national and (...) international data collaborations to improve health and healthcare. (shrink)

The review system on research with human participants in the Netherlands is characterised as a decentralised controlled and integrated peer review system. It consists of an independent governmental body, the Central Committee on Research Involving Human Subjects (or Central Committee), which regulates the review of research proposals by accredited Medical Research Ethics Committees (MRECs). The legal basis was founded in 1999 with the Medical Research Involving Human Subjects Act. The review system is a decentralised arrangement since most research (...) proposal are reviewed by the 30 accredited MRECs in the country. It is a controlled system in which the Central Committee is responsible for the accreditation and oversight of the MRECs and can make legally binding directives for these committees. The assessment of research proposals is an integrated peer review process in which all documents of the research file are reviewed by experts in one committee only. A small number of research proposals are assessed by the Central Committee and not by accredited MRECs. These proposals are on specific research categories such as gene therapy, cell therapy and embryo research. The review of research with surplus human embryos is regulated separately in the Embryos Act. The Central Committee provides support to the accredited MRECs and to researchers and sponsors. It is currently developing an internet portal to reduce the bureaucracy and make the review process more efficient and transparent. The Central Committee stimulates confidence on medical research in society by providing a public trial registry with core data on reviewed research proposals. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.4 (2002) 389-390 [Access article in PDF] IOM Report on the System for Protecting Human Research Participants Tom L. Beauchamp* In response to society's concerns about the use of human subjects in research, the Department of Health and Human Services commissioned the Institute of Medicine to perform a comprehensive assessment of current systems of research participant protection in the U.S., including recommendations (...) for reform (Committee 2002). Although the committee declared its frustration over the lack of data, it found ample evidence to indicate that there are pivotal weaknesses in the current system. First, it discovered dissatisfaction with the current system from virtually every quarter and at virtually every level. Second, it found evidence that IRBs are under severe strain and performing inadequately. Third, it found that the existing regulatory framework—the IRB system and the Common Rule—has not and probably now cannot react adequately to the constantly evolving research environment. Some of these problems might be handled through federal agencies, but the committee holds that the problems are more extensive and will require additional institutional support and professional attention.The committee found that federal protection requirements should be extended to every research project—private, public, or otherwise. Subjects should be, in this respect, equally protected in privately sponsored research.The committee found that the IRB system is in important respects a failure, especially when it alone is relied upon for ethics reviews in institutions. One set of problems concerns the proper education of IRB members. The committee recommends that all members henceforth be given a specialized knowledge of human research ethics. It finds that IRB deliberations commonly have been dominated by scientists, who often marginalize the perspectives of nonscientist members. It therefore recommends that unaffiliated members, nonscientists, local community representatives, and those representing the participant-perspective comprise at least 25 percent of the membership. It also recommends that no protocol be approved without three-quarters of the voting members concurring. [End Page 389]The committee recommends that institutions distinguish review aimed at (1) scientific merit, (2) conflict of interest, and (3) general Ethics Review. The distinction should more evenly distribute the work of institutional ethics review. The IRB should not conduct the initial scientific review nor should it be spending the bulk of its time purely in examining either scientific merit—as many IRBs now do—or conflict of interest. Instead, the conclusions of the scientific review should be submitted to the IRB for ethics-focused deliberations. Problems of both financial and nonfinancial conflicts of interest should be handled similarly, preferably by a committee properly distanced from the institution's interests.The committee underscores that consent must be understood on the model of an interactive dialogue between research staff and participants and not merely as a signed form or single-disclosure event. Conversations between the participant and the research staff should begin even prior to the point of enrollment and should be reinforced during each stage of the research. The committee finds that informed consent conversations and documents too often are being conceived as risk management tasks gauged to protect the institution from liability.The committee also believes that the system of protections established by a research program should be open to the public in order to foster and maintain the community's trust. Open communication should occur among all relevant stakeholders. The committee notes that currently no centralized system exists for the dissemination of information about clinical trials and other research activities.It urges reconsideration of present policies regarding compensation, finding that many research organizations provide at least short-term medical care for those who are injured, but that few organizations cover all potential risks and that many organizations have no effective policy of compensation. The report holds that providing reasonable compensation for bona fide instances of research harm is the only just system and is necessary to avoid diminished public trust.The committee holds that establishing the appropriate culture in research institutions will require sustained efforts to educate researchers, research administrators, IRB members, and... (shrink)

The Data Protection Act 1998 presents a number of significant challenges to data controllers in the health sector. To assist data controllers in understanding their obligations under the act, the Information Commissioner has published guidance, The Use and Disclosure of Health Data, which is reproduced here. The guidance deals, among other things, with the steps that must be taken to obtain patient data fairly, the implied requirements of the act to use anonymised or psuedonymised (...) data where possible, an exemption applicable principally to records based research, the right of patients to object to the processing of their data, and the interface of the act and the common law duty of confidence. (shrink)

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of (...) privacy. This paper argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system. (shrink)

The aim of the article is to explain the relationship between the ethical evaluation of scientific research involving personal data and the assessment of compliance with data protection law. The article presents the mutual relationship between the protection of personal data and scientific activity from a dogmatic perspective, the legal regulation of the processing of personal data in scientific research, and the so-called research exceptions that apply when data are processed for scientific research. (...) It also covers the importance of meeting the ethical requirements of scientific research in order to profit from the indicated exceptions. Finally, it provides a comparison between the ethical and the legal systems of personal data protection in research (objectives, criteria, authorities, and procedures). (shrink)

In attempting to provide protection to individuals and communities, childhood immunization has benefits that far outweigh disease risks. However, some parents decide not to immunize their children with some or all vaccines for reasons including lack of trust in governments, health professionals, and vaccine manufacturers. This article employs a theoretical analysis of trust and distrust to explore how twenty-seven parents with a history of vaccine rejection in two Australian cities view the expert systems central to vaccination policy and (...) practice. Our data show how perceptions of the profit motive generate distrust in the expert systems pertaining to vaccination. Our participants perceived that pharmaceutical companies had a pernicious influence over the systems driving vaccination: research, health professionals, and government. Accordingly, they saw vaccine recommendations in conflict with the interests of their child and “the system” underscored by malign intent, even if individual representatives of this system were not equally tainted. This perspective was common to parents who declined all vaccines and those who accepted some. We regard the differences between these parents—and indeed the differences between vaccine decliners and those whose Western medical epistemology informs reflexive trust—as arising from the internalization of countering views, which facilitates nuance. (shrink)

Evidence shows that knowledge concerning medicinal plants is heterogeneous, as the majority of people in a medical system know only a few plants. This heterogeneity may make sense from an adaptive viewpoint, as human beings tend to keep a small set of information that offers adaptive advantages because our brains can store limited amounts of data. From this scenario, we developed the structural core concept for medical systems: a group of medicinal plants with adaptive characteristics that (...) affect the structure and function of medical systems. We created a set of hypotheses based on the structural core concept to guide future studies investigating the structure and dynamics of local medical systems. Concerning the dynamics of medical systems, we suggest that the structural core is the part of the system that changes least over time, i.e., it is the most conservative. Thus, we can expect that species substitution events mainly occur outside of the structural core. From the medical system structure, we indicate that core plants tend to be favored in the transmission of knowledge. These plants also serve as a model for the selection of novel medicinal plants and are therefore an important factor for the medical system structure. Analysis of the structural core can help the understanding of the structure and dynamics of medical systems and can aid future bioprospecting studies, which can search for plants with pharmacological potential using the structural core. (shrink)

This book on privacy and data protection offers readers conceptual analysis as well as thoughtful discussion of issues, practices, and solutions. It features results of the seventh annual International Conference on Computers, Privacy, and Data Protection, CPDP 2014, held in Brussels January 2014. The book first examines profiling, a persistent core issue of data protection and privacy. It covers the emergence of profiling technologies, on-line behavioral tracking, and the impact of profiling on fundamental rights (...) and values. Next, the book looks at preventing privacy risks and harms through impact assessments. It contains discussions on the tools and methodologies for impact assessments as well as case studies. The book then goes on to cover the purported trade-off between privacy and security, ways to support privacy and data protection, and the controversial right to be forgotten, which offers individuals a means to oppose the often persistent digital memory of the web. Written during the process of the fundamental revision of the current EU data protection law by the Data Protection Package proposed by the European Commission, this interdisciplinary book presents both daring and prospective approaches. It will serve as an insightful resource for readers with an interest in privacy and data protection. (shrink)

Public health emergencies, such as the Covid-19 pandemic, put great pressure on healthcare workers (HCW) across the world, possibly increasing the risk of experiencing ethically challenging situations (ECS). Whereas experiencing ECS as a HCW in such situations is likely unavoidable, mitigation of their adverse effects (e.g., moral distress) is necessary to reduce the risk of long-term negative consequences. One possible route of mitigation of these effects is via work environmental factors. The current study aimed to examine: [1] risk factors associated (...) with ECS among HCW [2], intensity of moral distress associated with ECS across various occupational factors (i.e., profession, degree of exposure to patients with Covid-19), and [3] the impact of work environmental factors on this association, in a sample of HCW during the pandemic. We employed multiple logistic and linear regression to self-report data from 977 HCWs at four Norwegian hospitals responding to a survey at the fourth wave of the pandemic. About half of HCW in this study had experienced ECS during the pandemic, and levels of moral distress associated with such were higher than in previous studies using similar assessment methods. Younger age, female sex, geographical work area (mid-north of Norway), and profession (nurse) were all associated with higher odds (range of OR: 1.30–2.59) of experiencing ECS, as were direct contact with patients with Covid-19. Among those participants who reported that they had experienced ECS during the pandemic, moral distress levels when recalling those situations were moderate (Mean 5.7 on a 0–10 scale). Men reported somewhat lower intensity of moral distress (partial eta squared; ηp2 = 0.02). Reporting a manageable workload (ηp2 = 0.02), and greater opportunity to work according to best practice (ηp2 = 0.02), were associated with lower levels of moral distress. Our findings suggest that moral distress could potentially be mitigated on an organizational level, particularly by focusing on ensuring a manageable workload, and an ability to work according to best practice. To build sustainable healthcare systems robust enough to withstand future public health emergencies, healthcare organizations should implement measures to facilitate these aspects of HCWs’ work environment. (shrink)

The exponential digitization of medical data has led to a transformation of the practice of medicine. This change notably raises a new complexity of issues surrounding health IT. The proper use of these communication tools, such as telemedicine, e-health, m-health the big medical data, should improve the quality of monitoring and care of patients for an information system to "human face". Faced with these challenges, the author analyses in an ethical angle the patient-physician relationship, sharing, transmission (...) and storage of medical information, setting pins to an ethic for the digitization of medical information. Drawing on good practice recommendations closely associated with values, this model is developing tools for reflection and present the keys to understanding the decision-making issues that reflect both the technological constraints and the complex nature of human reality in medicine. (shrink)

Researchers studying health systems in low-income countries face a myriad of ethical challenges throughout the entire research process. In this article, we discuss one of the greatest ethical challenges that we encountered during our fieldwork in West Africa: the difficulty of protecting the confidentiality of participants while locally disseminating results of health systems research to stakeholders. This reflection is based on experiences of authors involved in conducting evaluative research of interventions aimed at improving health systems in West (...) Africa. Our observation and collaboration with the research projects’ stakeholders informed our analysis. Examples from two research projects illustrate the issues raised. We found that in some cases there is a risk that local stakeholders may be able to identify research participants, or at least groups of participants, during the dissemination of results, even if they are anonymized. Four factors can interact and influence this challenge: 1) hierarchical structure, 2) small milieu, 3) immersion in a few sites, and 4) vested interests of decision-makers. For example, local stakeholders can sometimes find out when and where the data were collected. Moreover, health systems, especially rural healthcare centres, in West African countries can be small settings, so people often know each other. Some types of participants have unique characteristics or positions in the health system that may make them more easily identifiable by local stakeholders familiar with the environment. We identified a number of potential strategies that can help researchers minimize this difficulty and improve ethical research practices. These strategies pertain to the development of the study design, the process of obtaining informed consent, the dissemination of results, and the researchers’ reflexivity. Researchers must develop and adopt strategies that enable them to respect their promise of confidentiality while effectively disseminating sometimes sensitive results. Reflections surrounding ethical issues in global health research should be deepened to better address how to manage competing ethical responsibilities while promoting valuable research uptake. (shrink)

The presented paper focuses on the analysis of strategic documents at the level of the European Union concerning the regulation of artificial intelligence as one of the so-called disruptive technologies. In the first part of the article, we outline the basic terminology. Subsequently, we focus on the summarizing and systemizing of the key documents adopted at the EU level in terms of artificial intelligence regulation. The focus of the paper is devoted to issues of personal data protection and (...) cyber security included in these strategic documents. The final part contains recommendations for future research and evaluation of its key features. (shrink)

Suicide is a leading cause of death in the United States and in many other parts of the world. As such, suicide is frequently framed as a medical and public health problem for which solutions are best recommended by medical and public health authorities. While, medicalized suicide prevention strategies often resonate with traditional Christian commitments to preserve life and to discourage suicide, there is little evidence to date that medical approaches to suicide risk-reduction decrease population rates of (...) suicide. Further, by treating suicide as a phenomenon that can be eliminated through technical managerial control, modern suicide prevention efforts construe suffering persons as carriers of risk best managed by standardized and often dehumanizing environments of care. This emphasis on the medical management of risk also erodes the clinician–patient relationship and inappropriately centers medical (e.g., systematic health screenings) rather than non-medical (e.g., access to housing) forms of response. Although, medicalized suicide prevention efforts should not be dismantled, those working to prevent suicide would do well to prioritize a positive commitment to human dignity and worth and to engage social and political systems beyond medicine and public health, while drawing on specific contributions that clinicians can offer. (shrink)

Risk management is a well-known method to face technological challenges through a win–win combination of protective and proactive approaches, fostering the collaboration of operators, researchers, regulators, and industries for the exploitation of new markets. In the field of autonomous and unmanned aerial systems, or UAS, a considerable amount of work has been devoted to risk analysis, the generation of ground risk maps, and ground risk assessment by estimating the fatality rate. The paper aims to expand this approach with a (...) tool for managing data protection risks raised by drones through the design of flight maps. The tool should allow UAS operators choosing the best air corridor for their drones based on the so-called privacy by design principle pursuant to Article 25 of the EU data protection regulation, the GDPR. Among the manifold applications of this approach, the design of fly zones for drones can be tailored for public authorities in the phase of authorization of new operations, much as for national Data Protection authorities that have to control the lawfulness of personal data processing by UAS operations. The overall aim is to present the first win–win approach to data protection issues, aerospace engineering challenges, and risk management methods for the threats posed by this technology. (shrink)

BackgroundData processing of health research databases often requires a Data Protection Impact Assessment to evaluate the severity of the risk and the appropriateness of measures taken to comply with the European Union General Data Protection Regulation. We aimed to define and apply a comprehensive method for the evaluation of privacy, data governance and ethics among research networks involved in the EU Project Bridge Health.MethodsComputerised survey among associated partners of main EU Consortia, using a targeted instrument (...) designed by the principal investigator and progressively refined in collaboration with an international advisory panel. Descriptive measures using the percentage of adoption of privacy, data governance and ethical principles as main endpoints were used for the analysis and interpretation of the results.ResultsA total of 15 centres provided relevant information on the processing of sensitive data from 10 European countries. Major areas of concern were noted for: data linkage, access and accuracy of personal data and anonymisation procedures. A high variability was noted in the application of privacy principles.ConclusionsA comprehensive methodology of Privacy and Ethics Impact and Performance Assessment was successfully applied at international level. The method can help implementing the GDPR and expanding the scope of Data Protection Impact Assessment, so that the public benefit of the secondary use of health data could be well balanced with the respect of personal privacy. (shrink)

Confidentiality is a core value in medicine and public health yet, like other core values, it is not absolute. Medical ethics has typically allowed for breaches of confidentiality when there is a credible threat of significant harm to an identifiable third party. Medical ethics has been less explicit in spelling out criteria for allowing breaches of confidentiality to protect populations, instead tending to defer these decisions to the law. But recently, issues in military detention settings have raised the (...) profile of decisions to breach medical confidentiality in efforts to protect the broader population. National and international ethics documents say little about the confidentiality of detainee medical records. But initial decisions to use detainee medical records to help craft coercive interrogations led to widespread condemnation, and might have contributed to detainee health problems, such as a large number of suicide attempts several of which have been successful. More recent military guidance seems to reflect lessons learned from these problems and does more to protect detainee records. For the public health system, this experience is a reminder of the importance of confidentiality in creating trustworthy, and effective, means to protect the public's health. (shrink)

Global Medical Robotic Systems Market Size research report offers in-depth assessment of revenue growth, market definition, segmentation, industry potential, influential trends for understanding the future outlook and current prospects for the market. -/- Get a Sample Copy of the Report at – -/- Robots used in the medical industry, ranging for various applications surgical interventions to rehabilitation are known as medical robots. The ever increasing efficiency of these robots in performing tasks which include surgeries have been (...) pivotal in the rapid adoption of these robots in the medical industry. -/- Drivers & Restraints -/- The global medical robotic systems market size stood at USD 2,257.8 Million in 2018 and is projected to reach USD 10,710.6 Million in 2026, exhibiting at a CAGR of 21.5% in the forecast period -/- This study provides information about the sales and revenue during the historic and forecasted period of (2024 to 2030). Understanding the segments helps in identifying the importance of different factors that aid market growth. Estimations about the CAGR value for specific forecast period, market drivers, market restraints, and competitive strategies are assessed in this Medical Robotic Systems Market report. -/- This report focuses on Medical Robotic Systems Market volume and value at the global level, regional level and company level. From a global perspective, this report represents overall Medical Robotic Systems Market market size by analysing historical data and future prospect. Regionally, this report focuses on several key regions: North America, Europe, Asia-Pacific, Latin America and Middle East and Africa. -/- Competitive Strategic Window: -/- The Competitive Strategic Window analyses the competitive landscape in terms of markets, applications, and geographies to help the vendor define an alignment or fit between their capabilities and opportunities for future growth prospects. It describes the optimal or favorable fit for the vendors to adopt successive merger and acquisition strategies, geography expansion, research & development, and new product introduction strategies to execute further business expansion and growth during a forecast period. -/- An Overview of the Impact of COVID-19 on this Market: -/- The advancement of COVID-19 has conveyed the world to a stop. We fathom that this prosperity crisis amazingly influences associations across ventures. Nevertheless, everything fortunate or unfortunate should reach a conclusion. There are a couple of organizations that are fighting and some are thriving. By and large, essentially every region is relied upon to be impacted by the pandemic. -/- We are advancing incessant endeavors to help your business support and create during COVID-19 pandemics. Considering our experience and expertise, we will offer you an impact examination of Covid episode across ventures to help you with preparing for what's to come. -/- Key players covered in the global Medical Robotic Systems Market research report: -/- Ekso Bionics Intuitive Surgical Inc. Medtronic Stryker CYBERDYNE INC. BIONIK Smith & Nephew Zimmer Biomet Other Prominent Players. (shrink)

Stakeholders in medical research have roles in ensuring that research participants are protected. Medical journals play gatekeeping roles in the responsible conduct of research. They help guard against the publication of findings of unethical research, such as those with compromised participant welfare. Nigerian medical journals are being created to support the growing number of research enterprises. In this study, we aimed to determine the compliance of Nigerian medical journals with guidelines on research participant protection. This (...) was a descriptive cross-sectional study of Nigerian medical journals and articles. We used a checklist to obtain information on journal characteristics and the presence of recommendations from the International Committee of Medical Journal Editors (ICMJE) on the protection of research participants in the journal instructions to authors and articles. The data were analysed via IBM SPSS version 23. We studied 40 journals and 350 journal articles. Thirty-one (77.5%) journals required ethical approval and the Declaration of Helsinki statement in their instructions to the authors, while informed consent was present in 26 (65.0%) journals; 6 (15.0%) journals had no participant protection guidelines. Forty-one (11.7%) articles complied with all three recommendations on research participant protection, whereas 60 (17.1%) articles did not. Ethical approval was most common in 268 (76.6%) articles, whereas it was least common in statements on the Declaration of Helsinki in 50 (14.3%) articles. The presence of participant protection recommendations in instructions to authors was not associated with compliance with these recommendations in published articles (p > 0.05). Although there is fairly good compliance of Nigerian medical journals with research participant protection recommendations, there are still gaps, which highlight the need for remedial measures. (shrink)

With new technologies come new ethical challenges. Often, we can apply previously established principles, even though it may take some time to fully understand the detail of the new technology - or the questions that arise from it. The International Commission on Radiological Protection, for example, was founded in 1928 and has based its advice on balancing the radiation exposure associated with X-rays and CT scans with the diagnostic benefits of the new investigations. They have regularly updated their advice (...) as evidence has accumulated and technologies have changed,1 and have been able to extrapolate from well-established ethical principles. Other new technologies lend themselves less well to off-the-peg ethical solutions. In several articles in this edition the ethical challenges associated with the use of artificial intelligence in medicine are addressed. Although multiple ethical codes and guidelines have been written on the use and development of AI, Hagendorf noted that many of them reiterated a ‘ deontologically oriented, action-restricting ethic based on universal abidance of principles and rules’. 2 Applying pre-existing ethical frameworks to artificial intelligence is problematic for several reasons. In particular, AI has two characteristics which are very different from the current clinical practice on which traditional medical ethics are based: 1. The so called ‘black box’ of deep learning, whereby a deep neural network is trained to iteratively adapt to make …. (shrink)

The sense of shame is part of human nature. What, then, is the role and significance of such a particular sensation, one that causes mental anxiety in a sick person’s weakest and the most vulnerable state? We know from historical documents going back as far as ancient Greece and Egypt that respecting patient privacy should be regarded as a moral duty for physicians in charge of treatment. However much today’s healthcare may have changed compared to centuries past, we note that (...) patient privacy has not lost its importance. In the current healthcare system, digital recording of private information and images enables others, in principle, to access these personal data quite easily. While we cannot reject the advantages offered by modern medicine, we need to consider how to design a healthcare system that respects patient privacy. What should be the standards of privacy in emergency services where urgent decisions and interventions have to be made? How should we guarantee patient privacy during medical education? The chapters of this book approach questions like these from the perspectives of different disciplines. The writings illustrate the increasing complexity of patient privacy issues in modern healthcare systems, particularly the growing difficulty to protect confidential data. At the same time, we can observe that patients are becoming more aware of their rights and their sensitivity in this area has increased. In our opinion, an approach that requires us to choose between the two values –health and privacy – would be wrong. Therefore, the question we should focus on is: “what kind of healthcare system should be developed to ensure the greatest respect for humans’ natural right to privacy?” If we want to answer this question and find sustainable solutions for these problems, it is crucial to use a multidisciplinary approach. From this perspective, the present volume is a first contribution to be published in Turkey to pursue this aim, including articles offered from various disciplines. (shrink)

A reliable medical image management must provide proper security for patient information. Protecting the medical information of the patients is a major concern in all hospitals. Digital watermarking is a procedure prevalently used to secure the confidentiality of medical information and maintain them, which upgrades patient health awareness. To protect the medical information, the robust and lossless patient medical information sharing system using crypto-watermarking method is proposed. The proposed system consists of two phases: (i) embedding (...) and (ii) extraction. In this paper, we securely share three types of patient information, medical image, electronic health record (EHR), and face image from one hospital to another hospital. Initially, all the three inputs are encrypted and the information is concordant. In order to enhance the robustness of the crypto-watermarking system, the obtained bit stream is compressed, and the compressed bit streams are embedded into the cover image. The same process is repeated for the extraction process. The experimentation result is carried out using different medical images with EHR, and the effectiveness of the proposed algorithm is analyzed with the help of peak signal to noise ratio. (shrink)

Airports are crucial channels of mobility for the global citizens of the twenty‐first century. They are points of entry and exit for tourists, business persons, workers, students and of course, for some refugees as well. The scale of operations is huge ‐ international passenger travel increased twelve‐fold in the second half of the twentieth century (Urry, 2000: 50) and the vast majority of this is accounted for in air travel. In the USA alone there are two million daily airtravelers on (...) 20,000 flights (Gottdiener,2001: 1). Airports are ‘placeless’ sites of temporary sojourn, air‐lock chambers for nomadic executives or sun‐seekers. But they have profound social and political significance, particularly in personal data handling. (shrink)

Medicine is often thought of as a science of the body, but it is also a science of data. In some contexts, it can even be asserted that data drive health. This article focuses on a key piece of data technology central to contemporary practices of medicine: the medical record. By situating the medical record in the perspective of its history, we inquire into how the kinds of data that are kept at sites of (...) clinical encounter often depend on informational requirements that originate well outside of the clinic, in particular in health insurance records systems. Although this dependency of today's electronic medical records on billing requirements is widely lamented by clinical providers, its history remains little studied. Following the archaeology of medicine developed by Michel Foucault in The Birth of the Clinic and expanding his methodology in light of more recent contributions to the field of media archaeology, this article excavates some of the underexplored technological conditions that help constitute today's electronic medical record. If in some contexts, it is true that data drive health, then an archaeology of medical records helps reveal how health insurance records often impact clinical care and, by extension, health and disease. (shrink)

In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students (...) were recruited from KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

Professor Vuori's paper, first presented at the fourth Medico-legal Conference in Prague in the spring of this year, deals with the problem of the maintenance of confidentiality in computerized health records. Although more and more information is required, the hardware of the computer systems is so sophisticated that it would be very expensive indeed to 'break in' and steal from a modern data bank. Those concerned with programming computers are becoming more aware of their responsibilities concerning confidentiality and (...) privacy, to the extent that a legal code of ethics for programmers is being formulated. They are also aware that the most sensitive of all relationships--the doctor-patient relationship--could be in danger if they failed to maintain high standards of integrity. An area of danger is where administrative boundaries between systems must be crossed--say between those of health and employment. Protection of privacy must be ensured by releasing full information about the type of data being stored, and by maintaining democratic control over the establishment of information systems. (shrink)

The impact of Online Social Networks on human lives is foreseen to be very large with unprecedented amount of data and users. OSN users share their ideas, photos, daily life events, feelings and news. Since OSNs’ security and privacy challenges are more potential than ever before, it is necessary to enhance the protection and filtering approaches of OSNs contents. This paper explores OSNs’ threats and challenges, and categorize them into: account-based, URL-based and content-based threats. In addition, we analyze (...) the existing protection methods and highlight their limitations and weaknesses. Based on that, we propose a comprehensive, user-level, proactive and real-time OSNs’ protection system, called Hybrid Real-time Social Networks Protector. HRSP has three components; a user-level security protocol and two classification models. The protocol defines a structure for OSN’s cryptographic services, including encryption, access control and users’ authentication. The classification models employ machine learning, black lists, white lists and users’ feedback, in order to classify URLs into: Benign, Risk and Inappropriate classes, and contents into: Benign, Hate speech and Inappropriate classes. We constructed two data sets of 150,000 URLs and 22,000 tweets to build and test the two classification models. Results show an overall accuracy of 93.2% for the URL model and 84.4% for the content model, while the protocol implementation produces compatible size and time overhead. The components of HRSP are integrated and have compatible design with OSN platforms. (shrink)

Human decisions are increasingly supported by decision support systems (DSS). Humans are required to remain “on the loop,” by monitoring and approving/rejecting machine recommendations. However, use of DSS can lead to overreliance on machines, reducing human oversight. This paper proposes “reflection machines” (RM) to increase meaningful human control. An RM provides a medical expert not with suggestions for a decision, but with questions that stimulate reflection about decisions. It can refer to data points or suggest counterarguments that (...) are less compatible with the planned decision. RMs think against the proposed decision in order to increase human resistance against automation complacency. Building on preliminary research, this paper will (1) make a case for deriving a set of design requirements for RMs from EU regulations, (2) suggest a way how RMs could support decision-making, (3) describe the possibility of how a prototype of an RM could apply to the medical domain of chronic low back pain, and (4) highlight the importance of exploring an RM’s functionality and the experiences of users working with it. (shrink)

Medical research saves lives--yet all too often, it is thwarted by a review system supposed to safeguard patients that instead creates needless delays and expense. Institutional Review Boards, which exist at every hospital and medical school that conducts medical research, have ended up imposing such complex, draconian conditions that research is frequently damaged, delayed, and distorted. This is why medical miracles like the COVID-19 vaccines, which were developed at warp speed, are far too rare. Instead, (...) class='Hi'>medical research in countless areas is kept at a horse-and-buggy pace. The result: unnecessary suffering and avoidable deaths. From Oversight to Overkill vividly recounts the story behind this crisis, one that remains unknown to the general public. Family physician and ethicist Simon Whitney shows how the IRB system was launched in response to scandals like the notorious Tuskegee syphilis study--and how, in recent decades, this well-intentioned program has become increasingly bureaucratic, convoluted, and stifling. Readers will learn how vital breakthroughs in treating conditions from kidney stones to heart attacks and premature birth have been delayed by IRB red tape, forcing doctors and patients to settle for less-effective treatments. They'll see how ill-informed demands from Congressional leaders that regulators "get tough" on scientists have caused respected research institutions to be shut down-with no benefit to the public. And they'll learn about a balanced, common-sense approach to reforming the system that can free scientists from pointless wheel-spinning while still protecting the public from the risks of unethical or careless experimentation. Until now, the debate about the IRB system's failures has been confined to specialty journals in medicine, law, and ethics. From Oversight to Overkill will finally alert citizens about this little-known crisis with America's medical research system-and what can be done about it. (shrink)

Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, (...) and more. At best, data about your health might end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

Decision support systems, which incorporate artificial intelligence and big data, are receiving significant attention in the public sector. Decision support systems are sociocultural artefacts that are subject to a mix of technical and political choices, and critical investigation of these choices and the rationales they reflect are paramount since they are inscribed into and may cause harm, violate fundamental rights and reproduce negative social patterns. Applying and merging the concepts of sense-making and translation, this article investigates the (...) rationales, translations and critical reflections that shape the development of a decision support system to support social workers assessing referrals concerning child neglect. It presents findings from a qualitative case study conducted in 2019–2020 at the Citizen Centre Children and Young People, Copenhagen Municipality, Denmark. The analysis shows how key actors through processes of translation construct, negotiate and readjust problem definitions, roles, interests, responsibilities and ideas of ambiguity and accountability. Although technological solutionism is present in these processes, it is not the only rationale invested. Rather, technological and data-driven rationales are adjusted to and merged with rationales of efficiency, return on investment and child welfare. Through continuous renegotiation of roles, responsibilities and problems according to these rationales, the key actors attempt to orchestrate ways of managing the complexity facing child welfare services by projecting images of future potentials of the decision support system that are yet to be realised. (shrink)

Medical research data is sensitive personal data that needs to be protected from unauthorized access and unintentional disclosure. In a research setting, sharing of data within the scientific community is necessary in order to make progress and maximize scientific benefits derived from valuable and costly data. At the same time, convincingly protecting the privacy of people participating in medical research is a prerequisite for maintaining trust and willingness to share. In this commentary, we will (...) address this issue and the pitfalls involved in the context of the PEP project1 that provides the infrastructure for the Personalized Parkinson’s Project,2 a large cohort study on Parkinson’s disease from Radboud University Medical Center, in cooperation with Verily life Sciences, an Alphabet subsidiary. (shrink)

The tenuous network of interconnected data that supports our nation's critical infrastructure has been built up, computer by computer, over only the last few decades. From punch cards to the supercomputers constructed by pioneers in today's fields, computers have been controlling our nation's critical sectors nearly every step of the way. As designers of today's critical systems gravitate slowly towards systems that require less human oversight than ever before, the vulnerability of the networks that control our electricity (...) systems, water supply, and banking services also continues to increase. In recent control system security reviews, the Departments of Energy and Homeland Security hired experts from Idaho National Labs who found that not only do "all of the evaluated systems suffer from high-impact security vulnerabilities that could be exploited by a low-skill-level attacker," but "in currently deployed systems, enhanced security controls cannot easily be implemented while still assuring basic system functionality". While the federal government has attempted on several occasions to outline its strategy to implement cybersecurity policies, its defining statement on the issue is in the form of the National Infrastructure Protection Plan. Even then, these government documents mean little if neither government nor private agencies implement them in their respective fields. (shrink)

Obtaining a sufficient amount of measurable and reliable results of student surveys has always posed a challenge for university teams tasked with the provision of the quality of education. This is especially visible at faculties where education is based on the classic classroom-based model, which then transfers to clinical units, hospital wards, and specialist laboratories. The highly unpredictable pandemic situation caused by the SARS-CoV-2 virus raises the bar for the evaluation of didactics. Fortunately, the continuous technological progress in the area (...) of Artificial Intelligence makes it possible to design the implementation of tools that would improve the position of systems for the management of courses of studies. The evaluation survey for didactic classes, as one of the last output data obtained during the process, may finally become a fully recognized source of information about the conducted classes and the teachers themselves. On the other hand, it may become a tool for those surveyed to influence the quality of classes, express their opinion, present suggestions and propositions generally pertaining to changes in the process of education. New information technologies not only make it possible to improve the effectiveness of reaching the recipients, but also provide completely new, very reliable methods of acquisition of credible behaviour, used as integration data in solutions based on machine communication. Using Artificial Intelligence coupled with data may make it possible to use intelligent communication for effective management of the process of surveying – a solution that has so far been used in business, in the form of the so-called bots. As a result, this would lead to an ongoing, fully quantitative and qualitative, assessment of classes. (shrink)

As we move our social institutions from paper and ink based operations to the electronic medium, we invisibly create a type of surveillance society, a panopticon society. It is not the traditional surveillance society in which government officials follow citizens around because they are concerned about threats to the political order. Instead it is piecemeal surveillance by public and private organizations. Piecemeal though it is, It creates the potential for the old kind of surveillance on an even grander scale. The (...) panopticon is the prison environment described by Foucault in which prison cells are arranged in a large circle with the side facing the inside of the circle open to view. The guard tower is placed in the middle of the circle so that guards can see everything that goes on in every cell. When we contemplate all the electronic data that is now gathered about each of us as we move through our everyday lives --- intelligent highway systems, consumer transactions, traffic patterns on the internet, medical records, financial records, and so on --- there seems little doubt that we are moving into a panopticon. The social issues that arise from this are too numerous to detail here, but data retention is an important part of it. In the paper-and-ink world, documents are filed, files are boxed, boxes are put away or thrown away. The capacity for data retrieval and manipulation is, thereby, limited by the sheer difficulty and cost of storing, finding, searching, and manipulating large numbers of paper files. This inconvenience functions as a mechanism whereby the system forgets past information, not unlike the way we ourselves forget. However, the story is very different in the digital world; digital information is easy to store, easy to search and manipulate, and inexpensive to keep over extensive periods of time. Digitalized information systems tend, therefore, to collect extensive ancillary information and to retain this information indefinitely. Such lack of forgetfulness is likely to hamper the ability of individuals to shed their past, and start over with a clean slate. Concerns about data retention were expressed in the early literature on the social impact of computing, but for the most part the issue has dropped from sight. Rarely, has the social good of discarding accumulated personal data been addressed. In this paper, we want to make the case by examining diverse cases in which retention of information by either business or governmental institutions hinders the ability of individuals to start over or to act autonomously. We hope our argument for the good of forgetfulness will challenge the standard framework in which such issues have traditionally been debated. The privacy debate exemplifies the traditional framework insofar as it has been characterized as involving an inherent tension between, on the one hand, the needs of organizations and institutions for more accurate and efficient information systems so as to further their goals and, on the other hand, the desire of individuals to have information about them kept private. Regan argues against this framing of the privacy issue in favor of one that recognizes the social importance of personal privacy. We will examine the non-forgetfulness of information systems as a problem threatening not just individual interests but social good as well. Cryptography is often cited as the technology that will give us privacy and mediate against surveillance. One of the uses of cryptography, encryption, will allow us, some hope, to create confidentiality and relationships of trust that will facilitate many of the social arrangements we now have and perhaps make them even more secure than they are now. Electronic cash, for example, could be created in such a form that it would have the anonymity associated now with hard cash Others are less optimistic of the potential for cryptography to re-create relationships of trust in the new medium. One important point that already seems clear is that even if encryption technology will protect the confidentiality and integrity of electronic transactions and data, it will NOT stop the observation of traffic patterns on networks. This seems an important distinction to put on the table. Our patterns of communication will continue to be available, no matter what is encrypted, and an amazing amount of information can be gleaned from this data. In a sense, it means content integrity but no anonymity. This will indubitably impact how we interact and with whom we interact. (shrink)

The paper examines the connection between online security and the protection of civil rights from a legal viewpoint, that is, considering the different types of rights and interests that are at stake in national and international law and whether, and to what extent, they concern matters of balancing. Over the past years, the purpose of several laws, and legislative drafts such as ACTA, has been to impose “zero-sum games”. In light of current statutes, such as HADOPI in France, or (...) Digital Economy Act in UK, the paper intends to illustrate how more satisfactory solutions are feasible in the field of online security, such as the new “Police and Criminal Justice Data Protection Directive” that the European Commission presented in January 2012. At least in Western legal systems, it should be clear that either civil rights prevail over security (no balancing), or such balance has to satisfactorily protect individual rights (proportionality). (shrink)

In the context of clinical and non-clinical biomedical practices, negligence is usually understood as a lapse of a specific professional duty by a healthcare worker or by a medical facility. This paper tries to delineate systemic negligence as another kind of negligence in the context of health systems, particularly in developing countries, that needs to be recognized and addressed. Systemic negligence is not just a mere collection of stray incidences of medical errors and system failures in a (...) health system, but is proposed in this paper as a more pervasive kind of neglect. Several non-medical factors, such as lack of social and political will, also contribute to it and hence is more difficult to address in a health system. This paper argues that recognizing systemic negligence and including it research agenda have special moral importance for researchers in developing world bioethics, public health ethics and for health activists in the developing world. For, it can be a potent health system barrier, and can seriously impair efforts to ensure patient safety, particularly in the weaker health systems. As it erodes accountability in a health system, addressing it is also important for the twin goals of ensuring patient safety and improving health system performance. Above all, it needs to be addressed because the tolerance of its persistence in a health system seems to undervalue health as a social good. (shrink)

Informed consent bears significant relevance as a legal basis for the processing of personal data and health data in the current privacy, data protection and confidentiality legislations. The consent requirements find their basis in an ideal of personal autonomy. Yet, with the recent advent of the global pandemic and the increased use of eHealth applications in its wake, a more differentiated perspective with regards to this normative approach might soon gain momentum. This paper discusses the compatibility (...) of a moral duty to share data for the sake of the improvement of healthcare, research, and public health with autonomy in the field of data protection, privacy and medical confidentiality. It explores several ethical-theoretical justifications for a duty of data sharing, and then reflects on how existing privacy, data protection, and confidentiality legislations could obstruct such a duty. Consent, as currently defined in the General Data Protection Regulation – a key legislative framework providing rules on the processing of personal data and data concerning health – and in the recommendation of the Council of Europe on the protection of health-related data – explored here as soft-law – turns out not to be indispensable from various ethical perspectives, while the requirement of consent in the General Data Protection Regulation and the recommendation nonetheless curtails the full potential of a duty to share medical data. Also other legal grounds as possible alternatives for consent seem to constitute an impediment. (shrink)

Although knowledge of torture and physical and psychological abuse was widespread at both the Guantanamo Bay detention facility and Abu Ghraib prison in Iraq, and known to medical personnel, there was no official report before the January 2004 Army investigation of military health personnel reporting abuse, degradation, or signs of torture. Mounting information from many sources, including Pentagon documents, the International Committee of the Red Cross, Amnesty International, Human Rights Watch, etc., indicate that medical personnel failed to maintain (...) medical records, conduct routine medical examinations, provide proper care of disabled and injured detainees, accurately report illnesses and injuries, and falsified medical records and death certificates. Medical personnel and medical information was also used to design and implement psychologically and physically coercive interrogations. The United States military medical system failed to protect detainee's human rights, violated the basic principles of medical ethics and ignored the basic tenets of medical professionalism. (shrink)

In Child Abuse, Family Rights, and the Child Protective System: A Critical Analysis from Law, Ethics, and Catholic Social Teaching, Stephen M. Krason gathers essays by leading scholars and practitioners to comment through the prism of Catholic social thought, on the plight afflicting American families and the role of the child protective system. Here readers will find critical essays on the deleterious effect of the 1974 passage of the Child Abuse Prevention and Treatment Act; assessments of current American policies on (...) child abuse and neglect and the role of the CPS within the context of prevailing international human rights principles and Catholic social teaching; a survey of the enforcement of CPS policies from a legal and constitutional perspective; research data disputing the CPS principle that all parents are potential abusers and illustrating the greater prevalence of abuse and neglect in broken, “blended,” and “untraditional” families; and arguments for poverty and unemployment as the prime culprits in the mistreatment of children. Also included are the amicus curiae briefs that the Society of Catholic Social Scientists submitted in two U.S. Supreme Court cases on parental rights, the CPS, and state control over the family. (shrink)

BackgroundOperation room (OR) planning is a complex process, especially in large hospitals with high rates of unplanned emergency procedures. Postponing elective surgery in order to provide capacity for emergency operations is inevitable at times. Elderly patients, residents of nursing homes, women, patients with low socioeconomic status and ethnic minorities are at risk for undertreatment in other contexts, as suggested by reports in the medical literature. We hypothesized that specific patient groups could be at higher risk for having their elective (...) surgery rescheduled for non-medical reasons.MethodsIn this single center, prospective observational trial, we analysed 2519 patients undergoing elective surgery from October 2018 to May 2019. A 14-item questionnaire was handed out to illicit patient details. Additional characteristics were collected using electronic patient records. Information on the timely performance of the scheduled surgery was obtained using the OR’s patient data management system. 6.45% of all planned procedures analysed were postponed. Association of specific variables with postponement rates were analysed using the Mann–Whitney U test and Fisher's exact test/χ2-test.ResultsSignificantly higher rates of postponing elective surgery were found in elderly patients. No significant differences in postponing rates were found for the variables gender, nationality (Germany, EU, non-EU), native language, professional medical background and level of education. Significantly lower rescheduling rates were found in patients with ties to hospital staff and in patients with a private health insurer.ConclusionsElderly patients, retirees and nursing home residents seem to be at higher risk for having their elective surgery rescheduled. However, owing to the study design, causality could not be proven. Our findings raise concern about possible undertreatment of these patient groups and provide data on short-term postponement of elective surgery.Trial registration DRKS00015836. Retrospectively registered. (shrink)

Introduction Errors are inevitable in medical practice and this issue has attracted the attention of healthcare systems worldwide. Therefore, it is of utmost importance to pay attention in educational systems. The present study aimed to investigate the frequency and cause of nursing students’ errors. Methods This descriptive study conducted based on a cross-sectional design. The researcher provided nursing students with a questionnaire. The participants were selected through a purposive sampling method. Eventually, the collected data were analyzed (...) by SPSS17. Results The mean value of errors in students was 32.83 ± 28.5 and the prevalence rate of the errors ranged from 0 to 175. In total, 2922 errors were reported by the students, the most frequent of which were wearing the same pair of gloves for the care of more than one patient, negligence to wash the hands and clean the thermometer before utilization. Moreover, errors in oxygen therapy and medication obtained the lowest frequency. Furthermore, most of the students’ errors were due to not having enough knowledge about medicines, lack of appropriate equipment, and poor clinical skills. Discussion and conclusion: The most frequent nursing students’ errors are related to hand hygiene and personal protection. In addition, the lack of enough skills and appropriate equipment are prevalent causes of nursing students’ errors. Authorities in this field should attend to these errors in nursing education, clinical practice, and nursing studies in order to promote this profession in all of these three dimensions. (shrink)

Pharmaceutical companies have long relied on direct marketing of their drugs to physicians through one-on-one meetings with sales representatives. This practice of “detailing” is substantial in its costs and its number of participants. Every year, pharmaceutical companies spend billions of dollars on millions of visits to physicians by tens of thousands of sales representatives.Critics have argued that drug detailing results in sub-optimal prescribing decisions by physicians, compromising patient health and driving up spending on medical care. In this view, physicians (...) often are unduly influenced both by marketing presentations that do not accurately reflect evidence from the medical literature and by the gifts that sales representatives deliver in conjunction with their presentations. (shrink)

Throughout its matrix of atoms, myoglobin has a network of cavities that are inhabited for short lengths of time by ligands released by photolysis from the myoglobin heme. The purpose or effect of this cavity network is not clear. A recently published kinetic scheme that fits data from many native and mutant myoglobin oxygen photolysis experiments can be modified easily into a kinetic scheme that includes kinetic proofreading. Proofreading would provide protection against contaminants and, specifically, might help protect (...) the cell from carbon monoxide poisoning. Here we present a two‐part model: (1) myoglobin represented by a kinetic description, which includes proofreading reactions associated with the cavities, and (2) a reaction–diffusion description of a myocyte model in which the part 1 myoglobin acts as a mobile buffer in simultaneous carbon monoxide and oxygen gradients. The non‐equilibrium nature of part 2 should promote the proofreading function of part 1. A simulation using the model demonstrates that the cavity system can in principle proofread, reducing mitochondrial enzyme contamination. BioEssays 26:422–433, 2004. © 2004 Wiley Periodicals, Inc. (shrink)

This book offers guidance and the current scholarship surrounding institutional review boards policies and procedures, human research protections for researchers and principal investigators, data privacy, data ethics, and other areas of interest related to human subjects research.

The medical profession is observing a rising number of calls to action considering the threat that climate change poses to global human health. Theory-led bioethical analyses of the scope and weight of physicians’ normative duty towards climate protection and its conflict with individual patient care are currently scarce. This article offers an analysis of the normative issues at stake by using Korsgaard’s neo-Kantian moral account of practical identities. We begin by showing the case of physicians’ duty to climate (...) protection, before we succinctly introduce Korsgaard’s account. We subsequently show how the duty to climate protection can follow from physicians’ identity of being a healthcare professional. We structure conflicts between individual patient care and climate protection, and show how a transformation in physicians’ professional ethos is possible and what mechanisms could be used for doing so. An important limit of our analysis is that we mainly address the level of individual physicians and their practical identities, leaving out important measures to respond to climate change at the mesolevels and macrolevels of healthcare institutions and systems, respectively. (shrink)

This paper conducts a comparative analysis of data governance mechanisms concerning the secondary use of health data in Taiwan and the European Union (EU). Both regions have adopted distinctive approaches and regulations for utilizing health data beyond primary care, encompassing areas such as medical research and healthcare system enhancement. Through an examination of these models, this study seeks to elucidate the strategies, frameworks, and legal structures employed by Taiwan and the EU to strike a delicate balance (...) between the imperative of data-driven healthcare innovation and the safeguarding of individual privacy rights. This paper examines and compares several key aspects of the secondary use of health data in Taiwan and the EU. These aspects include data governance frameworks, legal and regulatory frameworks, data access and sharing mechanisms, and privacy and security considerations. This comparative exploration offers invaluable insights into the evolving global landscape of health data governance. It provides a deeper understanding of the strategies implemented by these regions to harness the potential of health data while upholding the ethical and legal considerations surrounding its secondary use. The findings aim to inform best practices for responsible and effective health data utilization, particularly in the context of medical AI applications. (shrink)