Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not been explored in the bioethics or medical literature. This article (1) reviews conceptual, medical and legal differences between death by neurologic criteria (DNC) in the United Kingdom and the rest of the world to contextualize medicolegal challenges to DNC; (...) (2) summarizes highly publicized legal cases related to DNC in the United Kingdom, including the nuanced 2022 case of Archie Battersbee, who was transiently considered dead by neurologic criteria, but ultimately determined to be in a vegetative state/unresponsive-wakeful state; and (3) provides an overview of ethical issues raised by medicolegal challenges to DNC in the United Kingdom and a comparison to the management of these challenges in the USA. (shrink)

Ariane Lewis reviewed medicolegal challenges to Death by Neurologic Criteria (DNC) in the United Kingdom in order to identify and discuss the ethical issues raised (Lewis 2024). Here I briefly clar...

In 2014, the American Academy of Pediatrics published its policy statement on contraception for adolescents, which provides, in effect, a mandate to temporarily sterilize all adolescents with long-acting reversible contraceptives for five to ten years. The author reviews the AAP guidelines and their effects on Catholic adolescents, their families, and adolescent health care providers. He then discusses medicolegal issues raised by the policy, outlines Catholic strategies for combating it, and proposes a diocese-based physician-led program for teaching and counseling (...) elementary and high school students. (shrink)

The Italian parliament passed the law on assisted reproduction after a heated debate. The promulgation of this law (Law 40/2004) is the end point of a long and troubled journey that has seen many bills come and go, all of which have failed. The law consists of a whole set of regulations that will have a great impact on health and on society in general. The law is against many of the technical practices of assisted reproduction; several such practices are (...) banned. This paper outlines ethical and medicolegal issues arising in connection with the law. The law states that no more than three embryos must be created at any one time and all the embryos created must be transferred together even if the couple does not need all the embryos. Embryo cryopreservation is also forbidden, as is assisted reproductive technology (ART), which uses a third party in any way, and the screening of embryos for genetic defects. (shrink)

In _Bioethics in Context_, Gary Jones and Joseph DeMarco connect ethical theory, medicine, and the law, guiding readers toward a practical and legally grounded understanding of key issues in health-care ethics. This book is uniquely up-to-date in its discussion of health-care law and unpacks the complex web of American policies, including the Patient Protection and Affordable Care Act. Useful case studies and examples are embedded throughout, and a companion website offers a thorough, curated database of relevant legal precedents as (...) well as additional case studies and other resources. (shrink)

George Annas serves a critical function as an incisive commentator on the interactions between law and medicine and law and public health. Along with Alex Capron, Dena Davis, Rebecca Dresser, and Larry GostinProfessor Annas analyses legal aspects of a spectrum of medicolegal issues both in a forum and in a manner that makes them accessible and understandable to a broad community of healthcare providers. His latest book, SomeChoice, continues that valuable tradition. The bulk of the volume (17 out (...) of 22 chapters) is drawn from essays originally published as the feature of the NewEnglandJournalofMedicine. The topics include such staples of patients' rights debate as the boundaries of informed consent, authorization of medical experiments, and physician-assisted suicide. A treat is the inclusion of less frequently covered issues, such as access to health information concerning presidential candidates and constitutional bounds of limits on cigarette advertising. (shrink)

George Annas serves a critical function as an incisive commentator on the interactions between law and medicine and law and public health. Along with Alex Capron, Dena Davis, Rebecca Dresser, and Larry Gostin—to pinpoint a few—Professor Annas analyses legal aspects of a spectrum of medicolegal issues both in a forum and in a manner that makes them accessible and understandable to a broad community of healthcare providers. His latest book, Some Choice, continues that valuable tradition. The bulk of (...) the volume is drawn from essays originally published as the “Legal Issues in Medicine” feature of the New England Journal of Medicine. The topics include such staples of patients' rights debate as the boundaries of informed consent, authorization of medical experiments, and physician-assisted suicide. A treat is the inclusion of less frequently covered issues, such as access to health information concerning presidential candidates and constitutional bounds of limits on cigarette advertising. (shrink)

The concept of reproductive health promises to play a crucial role in improving health care provision and legal protection for women around the world. This is an authoritative and much-needed introduction to and defence of the concept of reproductive health, which though internationally endorsed, is still contested. The authors are leading authorities on reproductive medicine, women's health, human rights, medical law, and bioethics. They integrate their disciplines to provide an accessible but comprehensive picture. They analyse 15 cases from different countries (...) and cultures, and explore options for resolution. The aim is to equip readers to fashion solutions in their own health care circumstances, compatibly with ethical, legal and human rights principles. (shrink)

In a special issue of this journal, a range of authors addressed the critical problem of difference in bioethics. To what extent do class, culture, ethnicity, and race affect the ethical decisions that patients and professionals must make in a medical context? Those arguing for an understanding of cultural influences in bioethical decisionmakingtypically argue from the perspective of individual case studies to demonstrate the importance of these social constructs. Others, like Erika Blacksher, however, worry that this approach will obscure the (...) uniqueness of individual decisionmakng patterns, allowing all persons of a single group to be aggregated as if their class, cultural construct, or religious affiliation were the single motive element in their medicolegal decisionmaking. There is, she cautions, a risk of misuse if a professional care provider reflexively assumes individual patient or surrogate reactions on the basis of ethnicity or culture. (shrink)

Background In an increasingly globalized world, legal protocols related to health care that are both effective and culturally sensitive are paramount in providing excellent quality of care as well as protection for physicians tasked with decision making. Here, we analyze the current medicolegal status of brain death diagnosis with regard to end-of-life care in Japan, China, and South Korea from the perspectives of front-line health care workers. Main body Japan has legally wrestled with the concept of brain death for (...) decades. An inability to declare brain death without consent from family coupled with cultural expectations of family involvement in medical care is mirrored in other Confucian-based cultures and may complicate care for patients from these countries when traveling or working overseas. Within Japan, China, and South Korea, medicolegal shortcomings in the diagnosis of brain death act as a great source of stress for physicians and expose them to potential public and legal scorn. Here, we detail the medicolegal status of brain death diagnosis within Japan and compare it to China and South Korea to find common ground and elucidate the impact of legal ambiguity on health care workers. Conclusion The Confucian cultural foundation of multiple Asian countries raises common issues of family involvement with diagnosis and cultural considerations that must be met. Leveraging public education systems may increase awareness of brain death issues and lead to evolving laws that clarify such end-of-life issues while protecting physicians from sociocultural backlash. (shrink)

As clinicians, this case1 raises both personal and professional challenges. A key issue is who carries legal parental responsibility for the difficult decisions that may be required around life-sustaining care in baby T. Medicolegally, we understand that the surrogate mother holds legal parental responsibility for baby T until this can be transferred to the intended parents.2 But this process can take many months to complete, after the birth of baby. As M is now critically ill and unable to engage in (...) any discussion around the care of her baby, who becomes the legal guardian of the baby, for complex decision making that involves either reorientation of care away from intensive care with the inevitable consequence of death in this extremely premature baby, or continuing this life-sustaining treatment with a high likelihood for major neonatal morbidity and longer term disability? Does it pass onto one of the IPs as the genetic father, or does this responsibility fall on the neonatal consultant managing the baby in intensive care? And if an antenatal surrogacy agreement had existed, is it legally binding for inclusion of the IPs perspectives in the decision-making, especially if our medical decision making turns out to be at discord with the beliefs and wishes of the IPs for baby T? Box 1 ### Current surrogacy proceedings in the UK.2 6–8 The Law Commission UK5 is currently reviewing the decision on whether legal parenthood to intended parents can be effected immediately at the time of birth of the baby. Parental orders. (shrink)

As guidelines for neonatal resuscitation evolve from a growing evidence base, clinicians must ensure that practice is closely aligned with the available evidence, based on methodologically sound and ethically conducted research. This paper reviews ethical, legal and risk-management issues arising during the design of a quality-assurance project to make video recordings of neonatal resuscitations after high-risk deliveries. The issues, which affect patients, researchers, staff and the hospital at large, include the following: 1) Informed consent for research involving emergency (...) procedures is often not possible, for lack of time to provide sufficient information. The mental capacity of the subject or parent may be compromised by the impending emergency, and freedom of choice is threatened by the time pressure to consent. 2) Video recording of the inevitable medical errors raises issues of whether participating staff may be identifiable and accountable, affecting their willingness to participate in such research. The approach to staff participation and identification is reviewed. 3) The use of video data for education threatens the privacy of research subjects. The ethics of maintaining privacy is balanced with the ethics of using the data to improve practice of resuscitation. 4) The research subjects (patients, or the staff whose performance is being monitored) must be defined. 5) There are legal and ethical aspects of management and ownership of data. 6) The role of the Human Research Ethics Committee in protecting the research subject and possibly the medicolegal interests of the hospital is discussed. This paper reviews the literature and discusses the issues. (shrink)

Oleoresin capsicum (OC) is a substance contained in capsicum peppers that produces a range of physiological responses in mammals, including inflammation and respiratory constriction. It is also the active ingredient in the most widely used chemical munition in the United States. OC-based pepper sprays are now issued to police officers by nearly every law enforcement agency in the country. Police use of pepper spray is supported by an ostensibly evidence-based consensus that OC exposure presents no significant risk of lethal injury. (...) This essay examines the peculiar durability of that nonlethality consensus in the face of mounting contradictory evidence. It traces the trajectory of European science that links race and capsaicin sensitivity from colonization to slavery to the twentieth century, while also narrating the emergence of OC-based pepper spray as a distinct and highly desirable category of police weapon. It concludes by exposing medicolegal death examination practices that continually rehabilitate the nonlethality consensus by naturalizing deaths caused by or linked to OC exposure. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Basic Resources in Bioethics*Mary Carrington Coutts (bio)OrganizationsKennedy Institute of Ethics Georgetown University Washington, DC 20057 National Reference Center for Bioethics Literature 800-MED-ETHX or 202-687-3885The Hastings Center 255 Elm Road Briarcliff Manor, NY 10510 914-762-8500Society for Health and Human Values 6728 Old McLean Village Drive McLean, VA 22101 703-556-9222NOTE: There are numerous organizations in the United States and abroad that deal with bioethical issues. For a more comprehensive listing (...) of those organizations, see:American Hospital Association. Directory of Biomedical Ethics Organizations. Chicago: American Hospital Association, 1989.National Reference Center for Bioethics Literature. International Directory of Bioethics Organizations edited by Robert Iosco. Washington, DC: Georgetown University, 1986.Encyclopedia and DictionaryDictionary of Medical Ethics. Edited by A.S. Duncan, G.R. Dunstan, and R.B. Welborn. New rev. ed. New York: Crossroad, 1981. [End Page 75]Encyclopedia of Bioethics. Edited by Warren T. Reich. 4 vols. New York: Macmillan-Free Press, 1978; or 1982 reprint in 2 volumes available to members of the Kennedy Institute of Ethics through the membership office, 202-687-8099.Online DatabaseBioethicsline. Produced by the Kennedy Institute of Ethics for the National Library of Medicine. Searchable through the MEDLARS system. Focuses on questions of ethics and public policy in the fields of health care and biomedical research. Searches available upon request to the National Reference Center for Bioethics Literature. For information on securing a personal access code from the National Library of Medicine, call 800-638-8480.BibliographiesBibliography of Bioethics. Edited by LeRoy Walters and Tamar Joy Kahn. Washington, DC: Kennedy Institute of Ethics, Georgetown University. Issued annually since 1975. Corresponds to the BIOETHICSLINE database. Provides references to resources on ethical and public policy issues in medicine and biomedical research. Includes abstracts; arranged by broad subject categories.Ethics in Nursing. Edited by Terry Pence. 2nd ed. New York: National League for Nursing, 1986. An annotated bibliography of nursing ethics. Includes author and subject indexes.Goldstein, Doris M. Bioethics: A Guide to Information Sources. Detroit: Gale Research, 1982. A selected, annotated bibliography to the literature of bioethics.The Hastings Center's Bibliography of Ethics, Biomedicine and Professional Responsibility. Compiled by the staff of the Hastings Center. Frederick, MD: University Publications of America, 1984.Medical Ethics: An Annotated Bibliography. Edited by Mark Siegler, Peter A. Singer and David L. Schiedermayer. Philadelphia: American College of Physicians, 1988.Current Awareness ServicesNOTE: Several journals have sections where they highlight new publications. See, for example, the "In The Literature" section of the Hastings Center Report, or the "Medicolegal Reference Shelf" section of Law, Medicine and Health Care. Other services include:BioLaw. Edited by James F. Childress and Ruth D. Gaare. Frederick, MD: [End Page 76] University Publications of America, 1983 to present. Annual with bimonthly updates. (Previous title: Bioethics Reporter.) A compendium of articles and legal documents on ethical and legal issues in medicine, health care administration and human experimentation. Includes the text of important legal decisions in the Resources section.New Titles in Bioethics. Edited by Luanda Fitch Huttlinger. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. Published monthly 1975-1989; quarterly 1990—present. List of acquisitions by the National Reference Center for Bioethics Literature. Organized by subject categories. Includes ordering information for difficult-to-find items. Annual cumulation available.Scope Notes Series. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. A series of issue briefs including annotated bibliographies on the following popular bioethical topics:No 1. Dangerousness, September 1982, 5 p.No 2. Living Wills and Durable Powers of Attorney: Advance Directive Legislation and Issues, Revised February 1990, 15 p.No 3. Ethics Committees in Hospitals, Revised June 1989, 12 p.No 4. Diagnosis Related Groups and the Prospective Payment System, June 1984, 11 p.No 5. Baby Fae, January 1985, 19 p.No 6. Surrogate Mothers, Revised January 1988, 12 p.No 7. Withholding or Withdrawing Nutrition or Hydration, Revised September 1988, 12 p.No 8. AIDS: Law, Ethics and Public Policy, April 1988, 12 p.No 9. Bioethics Audiovisuals 1982 to Present, September 1988, 12 p.No 10. Ethical Issues in... (shrink)

The relation between moral philosophy and moral practice is itself philosophically controversial. nor is there any one determinate formula through which to express the relations between the basic principles of morality and of rationality itself. the concepts of the moral and the political are both 'essentially contestable' and so too is the nature of their relations; that is, their analysis is itself of moral and political import. nevertheless, in periods of overall stability, this contestability may hardly be apparent. all this, (...) and its connection with philosophy's fundamental commitment to questioning and self-awareness has a deep significance for moral (and political) education. (shrink)

Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such as guidance and deliberative ethics forums, developed primarily to manage issues arising within the (...) clinic.We explore what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness. From thematic analysis of cases presented by clinical scientists at a specially convened meeting of the UK Genethics Forum, we derived three main ethical themes: (1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising.We argue that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness will be important to help clinical scientists and others in the recently expanded genetic/genomic medicine environment foster quality ethical thinking. (shrink)

We surveyed 1005 postdoctoral fellows by questionnaire about ethical matters related to biomedical research and publishing; 33% responded. About 18% of respondents said they had taken a course in research ethics, and about 31% said they had had a course that devoted some time to research ethics. A substantial majority stated willingness to grant other investigators, except competitors, access to their data before publication and to share research materials. Respondents’ opinions about contributions justifying authorship of research papers were mainly consistent (...) but at variance with those of many biomedical journal editors. More than half said they had observed what they considered unethical research practices. To increase the chances of getting a grant funded, 27% said they were willing to select or omit data to improve their results; to make publication of their work more likely or to benefit their career, 15% would select or omit data and 32% would list an undeserving author. Of respondents who thought they had been unfairly denied authorship on a paper, or been listed with or asked to list an undeserving author, 75% said they would be willing to list an undeserving author (P<0.001). Having taken a course dealing with research ethics had no effect on stated willingness to select or omit data or to fabricate data in the future, but was positively associated with willingness to grant undeserved authorship (P<0.04). Although these results do not controvert research demonstrating the effectiveness of ethics courses during professional education, they indicate that the research environment is a powerful component of a trainee’s experience and ethical development. (shrink)

In their article, Sahan and colleagues have presented ethical dilemmas faced by clinical scientists working in genomics.1 This is a welcome development since thus far little has been published on the ethical issues faced by clinical scientists in general. In their article, the authors present the three themes which emerged from discussions with clinical scientists in respect to three case studies: ‘(1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty (...) of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising’.1 One theme which appeared not to emerge is that of ethics education received by clinical scientists during their training, and this is the theme on which this commentary will focus. As noted elsewhere, ‘Clinical Scientists receive some lectures on clinical and research ethics as part of their training, but it amounts to only to a couple of hours of lectures (references omitted)’.2 The usual route to becoming a clinical scientist involves undertaking the 3-year postgraduate Scientist Training Programme (STP), though the ‘equivalence’ route is quite commonly taken by clinical scientists working in …. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

We read with great interest the commentaries submitted in response to our paper about clinical scientists and the role of ethical preparedness1. The responses raised some important themes that intersect with those discussed in our paper, and we are grateful for the opportunity to expand on them. Pruski2 highlights the importance of ethics education for clinical scientists, noting insufficient provision of such teaching within the clinical science profession. This gap means that scientists completing higher specialist training, who now encounter more (...) complex ethical challenges, are not benefitting from equivalent ethics education standards enjoyed by their counterparts in medical professions. We agree that clinical scientists deserve access to quality education in ethics in order to develop their skills in this area. Alongside a formal element to education, we see ethical preparedness (EP) as advocating for more informal education opportunities. This can be facilitated through the encouragement and creation of space (both physical and metaphorical) to discuss ethical issues as they arise in practice and explore potential scenarios in a supportive and judgement-free environment. Cultivating such an environment plays is crucial to develop professional skills in navigating ethical challenges, promoting a greater sense of collective responsibility and capability to do justice to ethical issues encountered. Van Steijvoort et al 3 draw …. (shrink)

patient care at the rural academic medical center. The purpose of this study was to (1) identify and describe the ethical issues perceived by registered nurses employed at a rural academic medical center and (2) analyze the variables influencing the registered nurses' ethical decision making and the process used by these registered nurses when resolving ethical issues. The 17 registered nurses who completed the survey identified a total of 21 ethical issues that they had experienced during the (...) last year. The ethical issues that nurses recalled were significantly more likely to be relationship issues, whereas issues documented within the ethics consultation service were significantly more likely to involve limiting treatment. Communication was a major variable influencing nurse's ethical decision making. Nurses felt the ethical issue resolved satisfactorily when the patient's needs were met, communication occurred with the patient and/or family, the entire healthcare team was involved and in agreement, and there was sufficient time available to make a decision. The nurses did not feel that the ethical situation was resolved satisfactorily when not handled from the patient's perspective; the patient suffered; there was a lack of teamwork, agreement, and/or support; and the process took too long. The nurses' recommendations for resources needed to assist with the resolution of ethical issues included accessible ethics mechanisms, education, improved interprofessional relationships and collaboration, and unbiased support for patient and family decision making. Implications for nurse managers are discussed and future research questions are identified.... (shrink)

In European countries (excluding the UK and Ireland), official statistics do not use racial or ethnic categories, but instead rely on proxies to collect data about discrimination. In the German microcensus, the proxy category adopted is ‘migration background’ (Migrationshintergrund): an individual has a ‘migration background’ when one or more of their parents does not have German citizenship by birth. We apply a coupled ethical-epistemic analysis to the ‘migration background’ category to illuminate how the epistemic issues contribute to ethical ones. (...) Our central claim is that these ethical-epistemic issues with the ‘migration background’ category are best analysed in terms of Charles Mills's ‘white ignorance’. Appealing to Annette Martín's structural account of white ignorance, we highlight the cyclical reinforcement of ignorance and racial injustice in the use of the ‘migration background’ variable. Colourblind eliminativism about race perpetuates the use of ‘migration background’, which sustains and intensifies racial injustices. (shrink)

ABSTRACT The article criticizes certain subjectivist and isolationist stances on controversial issues, and construes the teaching of controversial issues as an interpersonal task. On this view the teacher (1) encourages students to enter into the perspectives of others; (2) establishes points of contact which make reasoned discourse possible; and (3) inducts students into a wider domain where they are provided with knowledge about controversies as well as the skills for handling those controversies. All of this requires considerable intervention (...) on the part of the teacher. Current doubts about such intervention are unjustified. (shrink)

Recently, there have been a number of lawsuits in the United States in which families objected to performance of apnoea testing for determination of brain death. The courts reached conflicting determinations in these cases. We discuss the medicolegal complications associated with apnoea testing that are highlighted by these cases and our position that the decision to perform apnoea testing should be made by clinicians, not families, judges, or juries.

A large amount of research in mental health care relates to the notion of trust, as a possible common factor in psychopathology, and as a common dimension of psychotherapeutic alliance, underlying the various therapeutic methods. Such hypotheses call for a more detailed analysis of this notion of trust. The paper seeks to shed light on this issue by confronting the clinical and phenomenological approaches. We propose to focus on three issues at stake: 1/ the issue of the existence of (...) a tacit or pre-reflective trust, which can be defined by a phenomenological method. 2/ the issue of a foundation of trust in empathy, which questions the debates about empathy in phenomenological works. 3/ the issue of a structural self-opacity, brought to light through the paradoxical structure of trust, and that we propose to tackle with the notions of attestation and narrative identity. (shrink)

This book addresses the ethical problems in maternal-fetal medicine which impact directly on clinical practice.

Proceedings of the NATO Advanced Research Workshop, Athens, Greece, January 10-12, 1985.

Medical ethics has become an important and recognized component of physician training. There is one area, however, in which medical students receive little guidance. There is practically no discussion of the financial aspects of medical practice. My objective in this paper is to initiate a discussion about the moral dimension of physician billing practices. I argue that physicians should expand their conception of professional responsibility in order to recognize that their moral obligations toward patients include a commitment to honest and (...) forthright billing practices. I argue that physicians should aspire to a standard of clinical accuracy—not legal adequacy—in describing their activities. More generally, physicians should strive to promote an integrity-based professional culture, first and foremost by stigmatizing rather than celebrating creative billing practices, as well as condemning the misguided sense of solidarity that currently makes it taboo for physicians to criticize each other on this score. (shrink)

More than 5 billion people in the world own a smartphone. More than half of these have been used to collect and process health-related data. As such, the existing volume of potentially exploitable health data is unprecedentedly large and growing rapidly. Mobile health applications (apps) on smartphones are some of the worst offenders and are increasingly being used for gathering and exchanging significant amounts of personal health data from the public. This data is often utilized for health research purposes and (...) for algorithm training. While there are advantages to utilizing this data for expanding health knowledge, there are associated risks for the users of these apps, such as privacy concerns and the protection of their data. Consequently, gaining a deeper comprehension of how apps collect and crowdsource data is crucial. To explore how apps are crowdsourcing data and to identify potential ethical, legal, and social issues (ELSI), we conducted an examination of the Apple App Store and the Google Play Store in North America and Europe to identify apps that could potentially gather health data through crowdsourcing. Subsequently, we analyzed their privacy policies, terms of use, and other related documentation to gain insights into the utilization of users’ data and the possibility of repurposing it for research or algorithm training purposes. More specifically, we reviewed privacy policies to identify clauses pertaining to the following key categories: research, data sharing, privacy/confidentiality, commercialization, and return of findings. Based on the results of these app search, we developed an App Atlas that presents apps which crowdsource data for research or algorithm training. We identified 46 apps available in the European and Canadian markets that either openly crowdsource health data for research or algorithm training or retain the legal or technical capability to do so. This app search showed an overall lack of consistency and transparency in privacy policies that poses challenges to user comprehensibility, trust, and informed consent. A significant proportion of applications presented contradictions or exhibited considerable ambiguity. For instance, the vast majority of privacy policies in the App Atlas contain ambiguous or contradictory language regarding the sharing of users’ data with third parties. This raises a number of ethico-legal concerns which will require further academic and policy attention to ensure a balance between protecting individual interests and maximizing the scientific utility of crowdsourced data. This article represents a key first step in better understanding these concerns and bringing attention to this important issue. (shrink)