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The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients
AbstractThis paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty (H1); hope as reflective uncertainty (H2); hope as self-therapy (H3). The purpose of the paper is twofold. First, it aims to underline the sig...
Source: Journal of Bioethical Inquiry - April 16, 2018 Category: Medical Ethics Source Type: research

The Power of Knowledge, Responses to Change, and the Gymnastics of Causation
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - April 5, 2018 Category: Medical Ethics Source Type: research

Correction to: Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits
AbstractThe article [Title], written by [AuthorNames], was originally published electronically on the publisher ’s internet portal (currently SpringerLink) on [date of OnlineFirst publication] without open access. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 21, 2018 Category: Medical Ethics Source Type: research

Beyond Compliance Checking: A Situated Approach to Visual Research Ethics
AbstractVisual research methods like photography and digital storytelling are increasingly used in health and social sciences research as participatory approaches that benefit participants, researchers, and audiences. Visual methods involve a number of additional ethical considerations such as using identifiable content and ownership of creative outputs. As such, ethics committees should use different assessment frameworks to consider research protocols with visual methods. Here, we outline the limitations of ethics committees in assessing projects with a visual focus and highlight the sparse knowledge on how researchers r...
Source: Journal of Bioethical Inquiry - March 19, 2018 Category: Medical Ethics Source Type: research

The Voice Is As Mighty As the Pen: Integrating Conversations into Advance Care Planning
AbstractAdvance care planning allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of med...
Source: Journal of Bioethical Inquiry - March 17, 2018 Category: Medical Ethics Source Type: research

Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
AbstractWhen healthcare professionals feel constrained from acting in a patient ’s best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be “constrained” in the ir actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dyn...
Source: Journal of Bioethical Inquiry - March 14, 2018 Category: Medical Ethics Source Type: research

Moving Forward on Consent Practices in Australia
This study initiates the required evidence base through an audit of informed consent practices for medical research in the Australian state of Tasmania to assess the need for, and current uptake of, supplementary consent strategies. Drivers for and barriers against adoption of multimedia consent practices were explored in detail through interviews with key stakeholders, inc luding researchers, HREC chairs and members, and research participants, including Indigenous participants. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 12, 2018 Category: Medical Ethics Source Type: research

Review of the Ethical Issues of a Biomarker-Based Diagnoses in the Early Stage of Alzheimer ’s Disease
Conclusion: Based on the results and the additional comments in the discussion, several unanswered questions emerged. Therefore, careful consideration of all these ethical issues is required before the disclosure of a biomarker-based diagnosis to the patient with mild cognitive impairment due to Alzheimer ’s disease. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 12, 2018 Category: Medical Ethics Source Type: research

The Enduring Influence of a Dangerous Narrative: How Scientists Can Mitigate the Frankenstein Myth
AbstractReflecting the dangers of irresponsible science and technology, Mary Shelley ’sFrankenstein quickly became a mythic story that still feels fresh and relevant in the twenty-first century. The unique framework of the Frankenstein myth has permeated the public discourse about science and knowledge, creating various misconceptions around and negative expectations for scientists and for scientific enterprises more generally. Using the Frankenstein myth as an imaginative tool, we interviewed twelve scientists to explore how this science narrative shapes their views and perceptions of science. Our results yielded tw...
Source: Journal of Bioethical Inquiry - March 10, 2018 Category: Medical Ethics Source Type: research

Family Resemblances: Human Reproductive Cloning as an Example for Reconsidering the Mutual Relationships between Bioethics and Science Fiction
AbstractIn the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients ’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bio ethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and determine a perspective. Second, bioethics and science...
Source: Journal of Bioethical Inquiry - March 8, 2018 Category: Medical Ethics Source Type: research

A Morally Permissible Moral Mistake? Reinterpreting a Thought Experiment as Proof of Concept
AbstractThis paper takes the philosophical notion of suberogatory acts or morally permissible moral mistakes and, via a reinterpretation of a thought experiment from the medical ethics literature, offers an initial demonstration of their relevance to the field of medical ethics. That is, at least in regards to this case, we demonstrate that the concept of morally permissible moral mistakes has a bearing on medical decision-making. We therefore suggest that these concepts may have broader importance for the discourse on medical ethics and should receive fuller consideration by those working the field. The focus of the discu...
Source: Journal of Bioethical Inquiry - March 7, 2018 Category: Medical Ethics Source Type: research

Raising Rates of Childhood Vaccination: The Trade-off Between Coercion and Trust
This article examines the impact of coercive appr oaches to childhood vaccination and raises the question of the ethical justification of health policy initiatives based on coercion. We consider the current evidence regarding childhood vaccination in Australia, the small but real risks associated with vaccination, the ethical requirement for consen t for medical procedures, and the potential social harms of targeting non-vaccinators. We conclude that the evidence does not support a move to an increasingly mandatory approach that could only be delivered through paternalistic, coercive clinical practices. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - March 1, 2018 Category: Medical Ethics Source Type: research

Comparing Non-Medical Sex Selection and Saviour Sibling Selection in the Case of JS and LS v Patient Review Panel: Beyond the Welfare of the Child?
AbstractThe national ethical guidelines relevant to assisted reproductive technology (ART) have recently been reviewed by the National Health and Medical Research Council (NHMRC). The review process paid particular attention to the issue of non-medical sex selection, although ultimately, the updated ethical guidelines maintain the pre-consultation position of a prohibition on non-medical sex selection. Whilst this recent review process provided a public forum for debate and discussion of this ethically contentious issue, the Victorian case ofJS and LS v Patient Review Panel (Health and Privacy) [2011] VCAT 856 provides a r...
Source: Journal of Bioethical Inquiry - February 2, 2018 Category: Medical Ethics Source Type: research

Assisted Dying in Australia and Limiting Court Involvement in Withdrawal of Nutrition and Hydration
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 29, 2018 Category: Medical Ethics Source Type: research

Rearranging Deck Chairs on a Sinking Ship?
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 26, 2018 Category: Medical Ethics Source Type: research

Engendering Harm: A Critique of Sex Selection For “Family Balancing”
AbstractThe most benign rationale for sex selection is deemed to be “family balancing.” On this view, provided the sex distribution of an existing offspring group is “unbalanced,” one may legitimately use reproductive technologies to select the sex of the next child. I present four novel concerns with granting “family balancing” as a justification for se x selection: (a) families or family subsets should not be subject to medicalization; (b) sex selection for “family balancing” entrenches heteronormativity, inflicting harm in at least three specific ways; (c) the logic of aff...
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

The Ethics of Discharging Asylum Seekers to Harm: A Case From Australia
AbstractIn February 2016 a twelve-month-old asylum seeker, who came to be know as Baby Asha, was transferred from Nauru and hospitalized in Brisbane. This case came to public attention after Doctors refused to discharge Asha as she would have been returned to detention on Nauru. What in other circumstances would have been considered routine clinical care, quickly turned into an act of civil disobedience. This paper will discuss the ethical aspects of this case, along with its implications for clinicians and the broader healthcare community. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

Truth Disclosure Practices of Physicians in Jordan
In conclusion, most respondents opt to disclose the truth; however, the vast majority of these respondents make exceptions. Instances of non-disclosure are primarily motivated by sociocultural constructs. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

Disciplining Bioethics: The Debate Over Human Embryo Research
AbstractJ. Benjamin Hurlbut ’s bookExperiments in Democracy: Human Embryo Research and the Politics of Bioethics is an historiographical analysis of the American debate over embryo research. It covers more than four decades of this debate and uses key actors, bodies, and events as empirical evidence for its analysis. At a first glance, it might seem like a book that tells a story, butExperiments in Democracy is much more than that. Hurlbut uses the chapters of this narrative as case studies through which to examine practices of deliberative democracy and the role played by scientists and ethicists in the deliberative...
Source: Journal of Bioethical Inquiry - January 24, 2018 Category: Medical Ethics Source Type: research

Ethical Implications in Vaccine Pharmacotherapy for Treatment and Prevention of Drug of Abuse Dependence
AbstractDifferent immunotherapeutic approaches are in the pipeline for the treatment of drug dependence. “Drug vaccines” aim to induce the immune system to produce antibodies that bind to drugs and prevent them from inducing rewarding effects in the brain. Drugs of abuse currently being tested using these new approaches are opioids, nicotine, cocaine, and methamphetamine. In human clinical trials, “cocaine and nicotine vaccines” have been shown to induce sufficient antibody levels while producing few side effects. Studies in humans, determining how these vaccines interact in combination with their t...
Source: Journal of Bioethical Inquiry - January 19, 2018 Category: Medical Ethics Source Type: research

Law as Clinical Evidence: A New ConstitutiveModel of Medical Education and Decision-Making
AbstractOver several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors ’ decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative “constitutive” model is supported on the basis that medicine, medical law, and m...
Source: Journal of Bioethical Inquiry - January 18, 2018 Category: Medical Ethics Source Type: research

Minority Veterans Are More Willing to Participate in Complex Studies Compared to Non-minorities
ConclusionsMinorities were more likely to be willing to participate in complex studies compared to non-minorities. Low health literacy and therapeutic misconception are important mediators when considering willingness to participate in clinical research. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 19, 2017 Category: Medical Ethics Source Type: research

A Critical View of “On TB Vaccines, Patients’ Demands, and Modern Printed Media in Times of Biomedical Uncertainties: Buenos Aires, 1920–1950”
AbstractThe putative Pueyo ’s vaccine was a commercial venture that obtained marketing authorization in 1946, a turbulent period of Argentine history. After a few months, health authorities withdrew financial support from the state to buy the vaccine and required patients to sign a written consent to receive that product. A n independent investigation did not find any evidence of benefit in non-clinical and clinical evaluation of the putative vaccine. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 18, 2017 Category: Medical Ethics Source Type: research

Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges
AbstractIn the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived (DC) individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one ’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse (ethical recommendations and codes of practice). This analysis s...
Source: Journal of Bioethical Inquiry - December 12, 2017 Category: Medical Ethics Source Type: research

Beyond Trust: Plagiarism and Truth
AbstractAcademic misconduct distorts the relationship between scientific practice and the knowledge it produces. The relationship between science and the knowledge it produces is, however, not something universally agreed upon. In this paper I will critically discuss the moral status of an act of research misconduct, namely plagiarism, in the context of different epistemological positions. While from a positivist view of science, plagiarism only influences trust in science but not the content of the scientific corpus, from a constructivist point of view both are at stake. Consequently, I argue that discussions of research ...
Source: Journal of Bioethical Inquiry - December 12, 2017 Category: Medical Ethics Source Type: research

An Exploration of the Protective Effects of Investigators ’ Ethical Awareness upon Subjects of Drug Clinical Trials in China
This article analyses deficiencies in the protection of subjects in clinical drug trials under China ’s current laws and regulations; it emphasizes that investigators, as practitioners who have direct contact with subjects, play significant roles in protecting and safeguarding subjects’ rights and interests. The paper compares the status quo in China in this area to that of other countries and discusses ways China might enhance the protection of rights and interests of trial subjects, such as enhancing the ethical awareness of investigators through training, improving laws and regulations, and strengthening the...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits
AbstractPredictive genetic testing for susceptibility to psychiatric conditions is likely to become part of standard practice. Because the onset of most psychiatric diseases is in late adolescence or early adulthood, testing minors could lead to early identification that may prevent or delay the development of these disorders. However, due to their complex aetiology, psychiatric genetic testing does not provide the immediate medical benefits that current guidelines require for testing minors. While several authors have argued non-medical benefits may play a crucial role in favour of predictive testing for other conditions,...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Disclosure is Inadequate as a Solution to Managing Conflicts of Interest in Human Research
This article discusses some of the problems of relying on disclosure as a solution to address conflicts of interest in research, including the added complexities around institutional conflicts of interest. The case of Dan Markingson illustrates these issues and highlights the vulnerable position relying on disclosure as a solution leaves research participants in. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Mode 2 Knowledge Production in the Context of Medical Research: A Call for Further Clarifications
AbstractThe traditional researcher-driven environment of medical knowledge production is losing its dominance with the expansion of, for instance, community-based participatory or participant-led medical research. Over the past few decades, sociologists of science have debated a shift in the production of knowledge from traditional discipline-based (Mode 1) to more socially embedded and transdisciplinary frameworks (Mode 2). Recently, scholars have tried to show the relevance of Mode 2 knowledge production to medical research. However, the existing literature lacks detailed clarifications on how a model of Mode 2 knowledge...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Knowing, Anticipating, Even Facilitating but Still not Intending: Another Challenge to Double Effect Reasoning
AbstractA recent administrative law decision in Victoria, Australia, applied double effect reasoning in a novel way. Double effect reasoning has hitherto been used to legitimate treatments which may shorten life but where the intent of treatment is pain relief. The situation reviewed by the Victorian tribunal went further, supporting actions where a doctor agrees to provide pentobarbitone (Nembutal) to a patient at some time in the future if the patient feels at that time that his pain is unbearable and he wants to end his life. The offer to provide the drug was described as a palliative treatment in that it gave reassuran...
Source: Journal of Bioethical Inquiry - December 11, 2017 Category: Medical Ethics Source Type: research

Protecting Participants in Thought Experiments: The Role of the Research Ethics Committee
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 8, 2017 Category: Medical Ethics Source Type: research

Controlling futures? Online Genetic Testing and Neurodegenerative Disease
AbstractOnline personalized genetic testing services offer accessible and convenient options for satisfying personal curiosity about health and obtaining answers about one ’s genetic provenance. They are especially attractive to healthy people who wish to learn about their future risk of disease, as Paul Mason’s (2017) case study of “Jordan” illustrates. In this response, we consider how online genetic testing services are used by people diagnosed with a common neurodegenerative disease, Parkinson’s disease, to gain a sense of certainty regarding the future. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - December 1, 2017 Category: Medical Ethics Source Type: research

Reflecting Before Testing
AbstractThis response is a comment on the case of Jordan presented by Mason (2017). A key perspective we can take from this case is a consideration of: consumer motivations for testing, whether they have enough information and time to make a decision, and if the test they seek is entirely appropriate for them at their current stage of life. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 20, 2017 Category: Medical Ethics Source Type: research

Power to the People?
(Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 15, 2017 Category: Medical Ethics Source Type: research

The Dangers of Direct-to-Consumer Genetic  Testing for Alzheimer’s Disease
AbstractThe overarching issue with this case study is poor regulation and quality control over direct-to-consumer genetic testing, delivered in the absence of any medical oversight. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 13, 2017 Category: Medical Ethics Source Type: research

Personal Genomic Testing, Genetic Inheritance, and Uncertainty
AbstractThe case outlined below is the basis for theIn That Case section of the “Ethics and Epistemology of Big Data” symposium. Jordan receives reports from two separate personal genomic tests that provide intriguing data about ancestry and worrying but ambiguous data about the potential risk of developing Alzheimer’s disease. What began as a personal curiosity about gen etic inheritance turns into an alarming situation of medical uncertainty. Questions about Jordan’s family tree are overshadowed by even more questions about Alzheimer’s disease and healthy ageing. As a parent, Jordan is unsur...
Source: Journal of Bioethical Inquiry - November 8, 2017 Category: Medical Ethics Source Type: research

The Future Emerges from the Past
AbstractThe case of Jordan (Mason2017) highlights the gamble of connecting with the past through genomic testing. Unfortunately for Jordan, his genomic testing identified two variant genes which account for up to 75 per cent of early-onset Alzheimer ’s disease cases. Furthermore, his children were identified as having a 50 per cent risk of inheriting the gene which corresponds to the majority of early-onset Alzheimer’s disease cases. Now Jordan is not only burdened with the foreknowledge that he will most likely develop Alzheimer’s diseas e at a relatively young age but also burdened with the knowledge th...
Source: Journal of Bioethical Inquiry - November 8, 2017 Category: Medical Ethics Source Type: research

Ethics and Epistemology of Big Data
AbstractIn this Symposium on theEthics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks —i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding deb ates about the ethics, politics, and epistemology of biobank, database, genetic, and epidemiological research. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 8, 2017 Category: Medical Ethics Source Type: research

When Doctors and Parents Don ’t Agree: The story of Charlie Gard
AbstractThis discussion  follows a series of high profile cases involving a terminally ill child, Charlie Gard. These cases are significant as they trace the complexities that arise when parents and medical teams do not agree as well as addressing the question of whether there is a right to access experimental treatment. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - November 6, 2017 Category: Medical Ethics Source Type: research

Parents ’ and Physicians’ Perceptions of Children’s Participation in Decision-making in Paediatric Oncology: A Quantitative Study
AbstractThe goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (
Source: Journal of Bioethical Inquiry - October 11, 2017 Category: Medical Ethics Source Type: research

The President ’s Physician: An African Play
AbstractThis review examines issues relating to biomedical ethics and literature in the African dramaThe President ’s Physician by Emmanuel Babatunde Omobowale. The play investigates the psychological dilemma of Doctor Bituki Warunga, a personal physician to General Kalunga Ntibantunganyah who brutally and inhumanely rules Wavaria, a fictional African country. The doctor is faced with deciding to uphold the ethics of his profession versus terminating the tyrant ’s life to set the nation free. The play aims to help budding medical doctors rightly inculcate the principles of medical ethics—autonomy, benefic...
Source: Journal of Bioethical Inquiry - October 11, 2017 Category: Medical Ethics Source Type: research

The Ethics of Biomedical Big Data
AbstractThe availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought together thirty scholars in an edited volume that forms pa...
Source: Journal of Bioethical Inquiry - October 7, 2017 Category: Medical Ethics Source Type: research

Digital Humanitarians: How Big Data Is Changing the Face of Humanitarian Response
AbstractThis is a review of Patrick Meier ’s 2015 book,Digital Humanitarians: How Big Data Is Changing the Face of Humanitarian Response. The book explores the role of technologies such as high-resolution satellite imagery, online social media, drones, and artificial intelligence in humanitarian responses during disasters such as the 2010 Haiti earthquake. In this analysis, the book is examined using a humanitarian health ethics perspective. (Source: Journal of Bioethical Inquiry)
Source: Journal of Bioethical Inquiry - October 5, 2017 Category: Medical Ethics Source Type: research

The Issues of Freedom and Happiness in Moral Bioenhancement: Continuing the Debate With a Reply to Harris Wiseman
AbstractDuring the previous years, Harris Wiseman has devoted substantial attention to my stance on voluntary moral bioenhancement. He argued that he has been influenced by that position, but nonetheless criticized it. I haven ’t replied to his criticisms yet and wish to do so now. One of the reasons is to avoid my position being misrepresented. By replying to Wiseman’s criticisms, I also wish to clarify those issues in my standpoint that might have given rise to some of the misinterpretations. With the same purpose i n mind, I will demarcate my concept of voluntary moral bioenhancement from related standpoints...
Source: Journal of Bioethical Inquiry - October 5, 2017 Category: Medical Ethics Source Type: research

Morally-Relevant Similarities and Differences Between Assisted Dying Practices in Paradigm and Non-Paradigm Circumstances: Could They Inform Regulatory Decisions?
AbstractThere has been contentious debate over the years about whether there are morally relevant similarities and differences between the three practices of continuous deep sedation until death, physician-assisted suicide, and voluntary euthanasia. Surprisingly little academic attention has been paid to a comparison of the uses of these practices in the two types of circumstances in which they are typically performed. Acomparative domains of ethics analysis methodological approach is used in the paper to compare 1) the use of the three practices in paradigm circumstances, and 2) the use of the practices in paradigm circum...
Source: Journal of Bioethical Inquiry - October 5, 2017 Category: Medical Ethics Source Type: research

Biomedical Big Data: New Models of Control Over Access, Use and Governance
AbstractEmpirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated in informed consent documents or be implicit in the norms of confidentiality that gover...
Source: Journal of Bioethical Inquiry - October 5, 2017 Category: Medical Ethics Source Type: research

Big Data and Health Research —The Governance Challenges in a Mixed Data Economy
AbstractDenmark is a society that has already moved towards Big Data and a Learning Health Care System. Data from routine healthcare has been registered centrally for years, there is a nationwide tissue bank, and there are numerous other available registries about education, employment, housing, pollution, etcetera. This has allowed Danish researchers to study the link between exposures, genetics and diseases in a large population. This use of public registries for scientific research has been relatively uncontroversial and has been supported by facilitative regulation that allows data to be used without the consent of dat...
Source: Journal of Bioethical Inquiry - October 4, 2017 Category: Medical Ethics Source Type: research

Criminal Prohibition of Wrongful Re ‑identification: Legal Solution or Minefield for Big Data?
AbstractThe collapse of confidence in anonymization (sometimes also known as de-identification) as a robust approach for preserving the privacy of personal data has incited an outpouring of new approaches that aim to fill the resulting trifecta of technical, organizational, and regulatory privacy gaps left in its wake. In the latter category, and in large part due to the growth of Big Data –driven biomedical research, falls a growing chorus of calls for criminal and penal offences to sanction wrongful re-identification of “anonymized” data. This chorus cuts across the fault lines of polarized privacy law ...
Source: Journal of Bioethical Inquiry - September 14, 2017 Category: Medical Ethics Source Type: research

Health Professionals “Make Their Choice”: Pharmaceutical Industry Leaders’ Understandings of Conflict of Interest
AbstractConflicts of interest, stemming from relationships between health professionals and the pharmaceutical industry, remain a highly divisive and inflammatory issue in healthcare. Given that most jurisdictions rely on industry to self-regulate with respect to its interactions with health professionals, it is surprising that little research has explored industry leaders ’ understandings of conflicts of interest. Drawing from in-depth interviews with ten pharmaceutical industry leaders based in Australia, we explore the normalized and structural management of conflicts of interest within pharmaceutical companies. W...
Source: Journal of Bioethical Inquiry - September 14, 2017 Category: Medical Ethics Source Type: research

Measles Vaccination is Best for Children: The Argument for Relying on Herd Immunity Fails
This article examines an argument which may negatively influence measles vaccination uptake. According to the argument, an individual child in a highly vaccinated society may be better off by being non-vaccinated; the child does not risk vaccine adverse effects and is protected against measles through herd immunity. Firstly, the conclusion of the argument is challenged by showing that herd immunity ’s protection is unreliable and inferior to vaccination. Secondly, the logic of the argument is challenged by showing that the argument is inherently self-defeating and therefore logically inconsistent. In practice the arg...
Source: Journal of Bioethical Inquiry - August 16, 2017 Category: Medical Ethics Source Type: research