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  1. Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges.Elvira Perez Vallejos, Ansgar Koene, Christopher James Carter, Daniel Hunt, Christopher Woodard, Lachlan Urquhart, Aislinn Bergin & Ramona Statache - unknown
    This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental Health (...)
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  • Justifying Public Health Surveillance: Basic Interests, Unreasonable Exercise, and Privacy.Alan Rubel - 2012 - Kennedy Institute of Ethics Journal 22 (1):1-33.
    Surveillance plays a crucial role in public health, and for obvious reasons conflicts with individual privacy. This paper argues that the predominant approach to the conflict is problematic, and then offers an alternative. It outlines a Basic Interests Approach to public health measures, and the Unreasonable Exercise Argument, which sets forth conditions under which individuals may justifiably exercise individual privacy claims that conflict with public health goals. The view articulated is compatible with a broad range conceptions of the value of (...)
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  • Voluntary Consent: Why a Value-Neutral Concept Won't Work.A. Wertheimer - 2012 - Journal of Medicine and Philosophy 37 (3):226-254.
    Some maintain that voluntariness is a value-neutral concept. On that view, someone acts involuntarily if subject to a controlling influence or has no acceptable alternatives. I argue that a value-neutral conception of voluntariness cannot explain when and why consent is invalid and that we need a moralized account of voluntariness. On that view, most concerns about the voluntariness of consent to participate in research are not well founded.
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  • The Right to Withdraw From Research.G. Owen Schaefer & Alan Wertheimer - 2010 - Kennedy Institute of Ethics Journal 20 (4):329-352.
    The right to withdraw from participation in research is recognized in virtually all national and international guidelines for research on human subjects. It is therefore surprising that there has been little justification for that right in the literature. We argue that the right to withdraw should protect research participants from information imbalance, inability to hedge, inherent uncertainty, and untoward bodily invasion, and it serves to bolster public trust in the research enterprise. Although this argument is not radical, it provides a (...)
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  • Designing the Health-Related Internet of Things: Ethical Principles and Guidelines.Brent Mittelstadt - 2017 - Information 8 (3):77.
    The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be (...)
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  • Why Participating in Scientific Research is a Moral Duty.Joanna Forsberg, Mats Hansson & Stefan Eriksson - 2014 - Journal of Medical Ethics 40 (5):325-328.
    Our starting point in this article is the debate between John Harris and Iain Brassington on whether or not there is a duty to take part in scientific research. We consider the arguments that have been put forward based on fairness and a duty to rescue, and suggest an alternative justification grounded in a hypothetical agreement: that is, because effective healthcare cannot be taken for granted, but requires continuous medical research, and nobody knows what kind of healthcare they will need, (...)
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  • Recruiting Terminally Ill Patients Into Non-Therapeutic Oncology Studies: Views of Health Professionals. [REVIEW]Erika Kleiderman, Denise Avard, Lee Black, Zuanel Diaz, Caroline Rousseau & Bartha Knoppers - 2012 - BMC Medical Ethics 13 (1):33-.
    Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, (...)
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  • The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.Brent Daniel Mittelstadt & Luciano Floridi - 2016 - Science and Engineering Ethics 22 (2):303-341.
    The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...)
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  • Why Do People Participate in Epidemiological Research?Claudia Slegers, Deborah Zion, Deborah Glass, Helen Kelsall, Lin Fritschi, Ngiare Brown & Bebe Loff - 2015 - Journal of Bioethical Inquiry 12 (2):227-237.
    Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by (...)
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  • Ethical Justifications for Access to Unapproved Medical Interventions: An Argument for (Limited) Patient Obligations.Mary Jean Walker, Wendy A. Rogers & Vikki Entwistle - 2014 - American Journal of Bioethics 14 (11):3-15.
    Many health care systems include programs that allow patients in exceptional circumstances to access medical interventions of as yet unproven benefit. In this article we consider the ethical justifications for?and demands on?these special access programs (SAPs). SAPs have a compassionate basis: They give patients with limited options the opportunity to try interventions that are not yet approved by standard regulatory processes. But while they signal that health care systems can and will respond to individual suffering, SAPs have several disadvantages, including (...)
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  • An Ethics Framework for a Learning Health Care System: A Departure From Traditional Research Ethics and Clinical Ethics.Ruth R. Faden, Nancy E. Kass, Steven N. Goodman, Peter Pronovost, Sean Tunis & Tom L. Beauchamp - 2013 - Hastings Center Report 43 (s1):16-27.
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  • Non-Completion and Informed Consent.Alan Wertheimer - 2014 - Journal of Medical Ethics 40 (2):127-130.
    There is a good deal of biomedical research that does not produce scientifically useful data because it fails to recruit a sufficient number of subjects. This fact is typically not disclosed to prospective subjects. In general, the guidance about consent concerns the information required to make intelligent self-interested decisions and ignores some of the information required for intelligent altruistic decisions. Bioethics has worried about the ‘therapeutic misconception’, but has ignored the ‘completion misconception’. This article argues that, other things being equal, (...)
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  • Viewing Research Participation as a Moral Obligation: In Whose Interests?Stuart Rennie - 2011 - Hastings Center Report 41 (2):40.
    Over the past few years, a growing number of people have called for reconceptualizing participation in health research as a moral obligation. John Harris argues that seriously debilitating diseases give rise to important needs, and since medical research is necessary to relieve those needs in many circumstances, people are morally obligated to act as research subjects.1 Rosamond Rhodes claims that research participation is a moral obligation for reasons of justice, beneficence, and self-development: because we all benefit significantly from modern medicine, (...)
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  • The Ethics of Smart Pills and Self-Acting Devices: Autonomy, Truth-Telling, and Trust at the Dawn of Digital Medicine.Craig M. Klugman, Laura B. Dunn, Jack Schwartz & I. Glenn Cohen - 2018 - American Journal of Bioethics 18 (9):38-47.
    Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device dependability. For providers, (...)
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  • In Favor of a No-Consent/Opt-Out Model of Research With Clinical Samples.Angela Ballantyne - 2015 - American Journal of Bioethics 15 (9):65-67.
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  • Does Consent Bias Research?Mark A. Rothstein & Abigail B. Shoben - 2013 - American Journal of Bioethics 13 (4):27 - 37.
    Researchers increasingly rely on large data sets of health information, often linked with biological specimens. In recent years, the argument has been made that obtaining informed consent for conducting records-based research is unduly burdensome and results in ?consent bias.? As a type of selection bias, consent bias is said to exist when the group giving researchers access to their data differs from the group denying access. Therefore, to promote socially beneficial research, it is argued that consent should be unnecessary. After (...)
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  • Personal Knowledge and Study Participation.Rebecca Dresser - 2014 - Journal of Medical Ethics 40 (7):471-474.
    Scientists in earlier times considered personal research participation an essential component of their work. Exposing themselves to untested interventions was seen as the most ethical way to gauge the human response to those interventions. The practice was also educational, for it generated useful information that helped researchers plan subsequent human studies. Self-experimentation was eventually replaced by more comprehensive ethical codes governing human research. But it is time to bring back the practice of self-experimentation, albeit in modified form. Through serving as (...)
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  • Participants' Responsibilities in Clinical Research.D. B. Resnik & E. Ness - 2012 - Journal of Medical Ethics 38 (12):746-750.
    Discussions on the ethics and regulation of clinical research have a great deal to say about the responsibilities of investigators, sponsors, research institutions and institutional review boards, but very little about the responsibilities of research participants. In this article, we discuss the responsibilities of participants in clinical research. We argue that competent adult participants are responsible for complying with study requirements and fulfilling other obligations they undertake when they make an informed choice to enrol in a study. These responsibilities are (...)
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  • Free Riding and Organ Donation.Walter Glannon - 2009 - Journal of Medical Ethics 35 (10):590-591.
    With the gap between the number of transplantable organs and the number of people needing transplants widening, many have argued for moving from an opt-in to an opt-out system of deceased organ donation. In the first system, individuals must register their willingness to become donors after they die. In the second system, it is assumed that individuals wish to become donors unless they have registered an objection to donation. Opting out has also been described as presumed consent. Spain has had (...)
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  • Can RESEARCH and CARE Be Ethically Integrated?Emily A. Largent, Steven Joffe & Franklin G. Miller - 2011 - Hastings Center Report 41 (4):37-46.
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  • Whatever Happened to Human Experimentation?Carl Elliott - 2016 - Hastings Center Report 46 (1):8-11.
    Several years ago, the University of Minnesota hosted a lecture by Alan Milstein, a Philadelphia attorney specializing in clinical trial litigation. Milstein, who does not mince words, insisted on calling research studies “experiments.” “Don't call it a study,” Milstein said. “Don't call it a clinical trial. Call it what it is. It's an experiment.” Milstein's comments made me wonder: when was the last time I heard an ongoing research study described as a “human experiment”? The phrase is now almost always (...)
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  • Subversive Subjects: Rule‐Breaking and Deception in Clinical Trials.Rebecca Dresser - 2013 - Journal of Law, Medicine and Ethics 41 (4):829-840.
    Research subjects do not always conform to research requirements. When their personal interests conflict with the demands of participation, some subjects surreptitiously break the rules. These subjects are subversive — they undermine the research endeavor. In rejecting the restrictions research imposes, subversive subjects diminish the value of research results. From one vantage point, subversive subjects engage in unethical behavior. They create risks to themselves and others; they also disregard ethical responsibilities to adhere to research agreements and tell the truth. At (...)
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  • The Physician-Patient Relationship and a National Health Information Network.Leslie Pickering Francis - 2010 - Journal of Law, Medicine and Ethics 38 (1):36-49.
    The growing use of interoperable electronic health records is likely to have significant effects on the physician-patient relationship. This relationship involves two-way trust: of the physician in patients, and of the patients in their providers. Interoperable records opens up this relationship to further view, with consequences that may both enhance and undermine trust. On the one hand, physicians may learn that information from their patients is — or is not — to be trusted. On the other hand, patients may learn (...)
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  • Subversive Subjects: Rule-Breaking and Deception in Clinical Trials.Rebecca Dresser - 2013 - Journal of Law, Medicine and Ethics 41 (4):829-840.
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  • Making the Transition to a Learning Health Care System.Christine Grady & David Wendler - 2013 - Hastings Center Report 43 (s1):S32-S33.
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  • Full Disclosure of the ‘Raw Data’ of Research on Humans: Citizens’ Rights, Product Manufacturers’ Obligations and the Quality of the Scientific Database.Dennis J. Mazur - 2011 - Philosophy Compass 6 (2):90-99.
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