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)

We argue that while presidential candidates have the right to medical privacy, the public nature and importance of the presidency generates a moral requirement that candidates waive those rights in certain circumstances. Specifically, candidates are required to disclose information about medical conditions that are likely to seriously undermine their ability to fulfill what we call the "core functions" of the office of the presidency. This requirement exists because (1) people have the right to be governed only with (...) their consent, (2) people's consent is meaningful only when they have access to information necessary for making informed voting decisions, (3) such information is necessary for making informed voting decisions, and (4) there are no countervailing reasons sufficiently strong to override this right. We also investigate alternative mechanisms for legally encouraging or requiring disclosure. Protecting the public's right to this information is of particular importance because of the documented history of deception and secrecy regarding the health of presidents and presidential candidates. (shrink)

: The market success of managed health plans in the 1990s is bringing to medicine the easy availability of electronically stored information that is characteristic of the securities and consumer credit industries. Protection for medical confidentiality, however, has not kept pace with this information revolution. Employers, the managed care industry, and legal and ethics commentators frequently look to the concept of informed consent to justify particular uses of health information, but the elastic use of informed consent as a way (...) of responding to managed health plans' disclosure of information to third parties fails to address underlying questions involving substantive value choices. (shrink)

Fall prediction using machine learning has become one of the most fruitful and socially relevant applications of computer vision in gerontological research. Since its inception in the early 2000s, this subfield has proliferated into a robust body of research underpinned by various machine learning algorithms (including neural networks, support vector machines, and decision trees) as well as statistical modeling approaches (Markov chains, Gaussian mixture models, and hidden Markov models). Furthermore, some advancements have been translated into commercial and clinical practice, with (...) companies in various stages of development capitalizing on the aging population to develop new commercially available products. Yet despite the marvel of modern machine learning-enabled fall prediction, little research has been conducted to shed light on the security and privacy concerns that such systems pose for older adults. The present study employs an interdisciplinary lens in examining privacy issues associated with machine learning fall prediction and exploring the implications of these models in elderly care and the Internet of Medical Things (IoMT). Ultimately, a justice-informed set of best practices rooted in social geroscience is suggested to help fall prediction researchers and companies continue to advance the field while preserving elderly privacy and autonomy. (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)

Increasingly, medical records are being stored in computer databases that allow for efficiencies in providing treatment and in the processing of clinical and financial services. Computerization of medical records has also diminished patient privacy and, in particular, has increased the potential for misuse, especially in the form of nonconsensual secondary use of personally identifiable records. Organizations that store and use medical records have had to establish security measures, prompted partially by an inconsistent patchwork of legal standards (...) that vary from state to state. There is widespread appreciation among policy makers regarding the need for legal reform. The Health Information and Portability Accountability Act of 1996 mandated that the Administration develop regulations regarding the control of medical records. The Administration has offered regulations from the Department of Health and Human Services. Survey data reveal what healthcare professionals who have access to sensitive medical records believe are the greatest threats to patients' privacy. The overlap between Administration proposals and the responses of healthcare professionals is striking. (shrink)

This paper argues that individuals do, in a sense, own or have exclusive claims to control their personal information and body parts. It begins by sketching several arguments that support presumptive claims to informational privacy, turning then to consider cases which illustrate when and how privacy may be overridden by public health concerns.

Personal medical information is now bought and sold on the open market. Companies use it to make hiring and firing decisions and to identify customers for new products. The justification for providing such access to medical information is that doing so benefits the public by securing public safety, controlling costs, and supporting medical research. And individuals have supposedly consented to it. But we can achieve the common goods while better protecting privacy by making institutional changes in (...) the way information is maintained and protected. (shrink)

When people use online platforms to solicit funds from others for health-related needs, they are engaging in medical crowdfunding. This form of crowdfunding is growing in popularity, and its visibility is increasing as campaigns are commonly shared via social networking. A number of ethical issues have been raised about medical crowdfunding, one of which is that it introduces a number of privacy concerns. While campaigners are encouraged to share very personal details to encourage donations, the sharing of (...) such details may result in privacy losses for the beneficiary. Here, we explore the ways in which privacy can be threatened through the practice of medical crowdfunding by exploring campaigns for children with defined health needs scraped from the GoFundMe platform. We found specific privacy concerns related to the disclosure of private details about the beneficiary, the inclusion of images and the nature of the relationship between campaigner, funding recipient and beneficiary. For example, it was found that identifying personal and medical details about the beneficiary, including symptoms and treatment history, were often mentioned by campaigners. While the privacy concerns identified are problematic, they are also difficult to remedy given the strong financial incentive to crowdfund. However, crowdfunding platforms can enhance privacy protections by, for example, requiring those campaigning on behalf of child beneficiaries to ensure consent has been obtained from their guardians and providing additional guidelines for the inclusion of personal information in campaigns made on behalf of those not able to give their consent to the campaign. (shrink)

This chapter examines the relationship between the values of researchResearch and privacy in the context of medical research on patient data. An analytical framework is developed by interpreting the conception of privacyPrivacy advanced in the jurisprudence of the European Court of Human RightsHuman rights by reference to the Principle of Generic ConsistencyPrinciple of Generic Consistency, seminally argued to be the supreme principle of moralityMoralityby Alan GewirthAlan Gewirth. This framework is used to uncloak the inequity of positions uncompromisingly prioritising (...) research values over privacy values or vice versa—research worship and consentConsent worship, respectively. We then apply this framework to three hypothetical studies to show how apparent conflicts between research and privacy values can be resolved. (shrink)

The privacy and security of computerised medical data have become a major concern in Britain since the launch of the national electronic network for the National Health Service (NHSnet). A stakeholder analysis approach helps identify the wide range of the concerns which are involved, and this contributes to understanding the broader context within which technological developments take place and ethical concerns arise. The author is a member of the Information Systems Department of London School of Economics and Political (...) Science [LSE], Houghton Street, London WC2A 2AE, England; email [email protected]. (shrink)

The privacy and security of computerised medical data have become a major concern in Britain since the launch of the national electronic network for the National Health Service . A stakeholder analysis approach helps identify the wide range of the concerns which are involved, and this contributes to understanding the broader context within which technological developments take place and ethical concerns arise. The author is a member of the Information Systems Department of London School of Economics and Political (...) Science [LSE], Houghton Street, London WC2A 2AE, England; email [email protected]. (shrink)

Current law does not adequately protect patients' privacy or their medical records. Proposals to computerize these records could further erode confidentiality unless new federal laws are enacted.

Recently, John Doe, an undocumented immigrant who was detained by United States Immigration and Customs Enforcement, was admitted to a hospital off-site from a detention facility. Custodial officers accompanied Mr. Doe into the exam room and refused to leave as physicians examined him. In this analysis, we examine the ethical dilemmas this case brings to light concerning the treatment of patients in immigration detention and their rights to privacy. We analyze what US law and immigration detention standards allow regarding (...) immigration enforcement or custodial officers’ presence in medical exams and documentation of detainee health information. We describe the ethical implications of the presence of officers in medical exam rooms, including its effects on the quality of the patient-provider relationship, patient privacy and confidentiality, and provider's ability to provide ethical care. We conclude that the presence of immigration enforcement or custodial officers during medical examination of detainees is a breach of the right to privacy of detainees who are not an obvious threat to the public. We urge ICE and the US Department of Homeland Security to clarify standards for and tighten enforcement around when officers are legally allowed to be stationed in medical exam rooms and document detainees’ information. (shrink)

Individuals care about and guard their privacy intensely in many areas. With respect to patient medical records, people are exceedingly concerned about privacy protection, because they recognize that health care generates the most sensitive sorts of personal information. In an age of advancing technology, with the switch from paper medical files to massive computer databases, privacy protection for medical information poses a dramatic challenge. Given high-speed computers and Internet capabilities, as well as other advanced (...) communications technologies, the potential for abuse is much greater than ever before. At every stage in the process of collection and storage, dangers can arise, including entry errors, improper access, exploitation, and unauthorized disclosure. Secondary use and aggregation of data are all far easier, faster, and less expensive, and thus pose additional threats to an individual's control over the disposition of medical information. (shrink)

The prelims comprise: Introduction: Promise and Perils The History of Privacy as a Moral Concept Genetic Exceptionalism The Moral Basis of Medical Privacy Rights Genetic Paternalism Conclusion.

This paper argues that assessing personal responsibility in healthcare settings for the allocation of medical resources would be too privacy-invasive to be morally justifiable. In addition to being an inappropriate and moralizing intrusion into the private lives of patients, it would put patients’ sensitive data at risk, making data subjects vulnerable to a variety of privacy-related harms. Even though we allow privacy-invasive investigations to take place in legal trials, the justice and healthcare systems are not analogous. (...) The duty of doctors and healthcare professionals is to help patients as best they can—not to judge them. Patients should not be forced into giving up any more personal information than what is strictly necessary to receive an adequate treatment, and their medical data should only be used for appropriate purposes. Medical ethics codes should reflect these data rights. When a doctor asks personal questions that are irrelevant to diagnose or treat a patient, the appropriate response from the patient is: ‘none of your business’. (shrink)

While the balance between individual privacy and government monitoring or corporate surveillance has been a frequent topic across numerous disciplines, the issue of privacy within the family has been largely ignored in recent privacy debates. Yet privacy intrusions between parents and children or between adult partners or spouses can be just as profound as those found in the more “public spheres” of life. Popular access to increasingly sophisticated forms of electronic surveillance technologies has altered the dynamics (...) of family relationships. Monitoring, mediated and facilitated by practices of both covert and overt electronic surveillance, has changed the nature of privacy within the family. Parents are tracking children via GPS-enabled cell phone tracking software and are monitoring the Internet use of family members. Parents, siblings, and children are also posting information about their family members online, often without consent, and are creating social media profiles for others online. Prior scholarly work in philosophy and law has primarily addressed the privacy of children from third parties, usually commercial entities, and in the context of making medical decisions. Less attention has been directed at exploring a more general right of privacy of one family member against parents, siblings, children, or spouses. In this article, we do just that. We consider several moral rules that determine appropriate privacy boundaries within the family. More specifically, we will consider when overt or covert surveillance of a child, spouse, or partner by an adult family member is morally permitted. (shrink)

BackgroundThe principles of informed consent, confidentiality and privacy are often neglected during patient care in developing countries. We assessed the degree to which doctors in Lahore adhere to these principles during outpatient consultations.Material & MethodThe study was conducted at medical out-patient departments (OPDs) of two tertiary care hospitals (one public and one private hospital) of Lahore, selected using multi-stage sampling. 93 patients were selected from each hospital. Doctors' adherence to the principles of informed consent, privacy and confidentiality (...) was observed through client flow analysis performed by trained personnel. Overall patient perception was also assessed regarding these practices and was compared with the assessment made by our data collectors.ResultsSome degree of informed consent was obtained from only 9.7% patients in the public hospital and 47.8% in the private hospital. 81.4% of patients in the public hospital and 88.4% in the private hospital were accorded at least some degree of privacy. Complete informational confidentiality was maintained only in 10.8% and 35.5% of cases in public & private hospitals respectively. Informed consent and confidentiality were better practiced in the private compared to the public hospital (two-sample t-test > 2, p value < 0.05). There was marked disparity between the patients' perspective of these ethical practices and the assessment of our trained data collectors.ConclusionObservance of medical ethics is inadequate in hospitals of Lahore. Doctors should be imparted formal training in medical ethics and national legislation on medical ethics is needed. Patients should be made aware of their rights to medical ethics. (shrink)

Respecting privacy and patients’ satisfaction are amongst the main indicators of quality of care and one of the basic goals of health services. This study, carried out in 2007, aimed to investigate the extent to which patient privacy is observed and its correlation with patient satisfaction in three emergency departments of Tehran University of Medical Science, Iran. Questionnaire data were collected from a convenience sample of 360 patients admitted to emergency departments and analysed using SPSS software. The (...) results indicated that, according to 50.6% of the patients, the extent to which their privacy was respected was described as either ‘weak’ or ‘average’. Spearman’s coefficient indicated a significant correlation between respecting privacy and the patients’ satisfaction about the various aspects of privacy studied. Considering the levels of privacy observed together with the patients’ degree of satisfaction, it is imperative that clinical professionals address both aspects from conceptual and practical viewpoints. (shrink)

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in (...) human genetics. He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine. (shrink)

Data protection law has a linear logic, in that it purports to trace the lifecycle of personal data from creation to collection, processing, transfer, and ultimately its demise, and to regulate each step so as to promote the data subject’s control thereof. Big data defies this linear logic, in that it decontextualizes data from its original environment and conducts an algorithmic nonlinear mix, match, and mine analysis. Applying data protection law to the processing of big data does not work well, (...) to say the least. This Article examines the case of big medical data. A survey of emerging research practices indicates that studies either ignore data protection law altogether or assume an ex post position, namely that because they are conducted after the data has already been created in the course of providing medical care, and they use de-identified data, they go under the radar of data protection law. These studies focus on the end-point of the lifecycle of big data: if sufficiently anonymous at publication, the previous steps are overlooked, on the claim that they enjoy immunity. I argue that this answer is too crude. To portray data protection law in its best light, we should view it as a process-based attempt to equip data subjects with some power to control personal data about them, in all phases of data processing. Such control reflects the underlying justification of data protection law as an implementation of human dignity. The process-based approach fits current legal practices and is justified by reflecting dignitarian conceptions of informational privacy. (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)

The use of medical records in research can yield information that is difficult to obtain by other means. When such records are released to investigators in identifiable form, however, substantial privacy and confidentiality risks may be created. These risks become more common and more serious as medical records move to an electronic format. In 1996, the state of Minnesota enacted legislation with respect to consent requirements for the use of medical records in research. This legislation has (...) been widely criticized because—it is claimed—it creates an unnecessary impediment to research. In this article, we show that these arguments rest upon misinterpretation and/or misrepresentation of the 1996 legislation. A consent requirement had actually been present in Minnesota since 1976 (though codified in a patient rights statute rather than a privacy statute). The 1996 law does not require specific consent, as often claimed, but rather only a general authorization. The campaign against the Minnesota legislation appears to have been motivated by concern with respect to the then impending federal privacy rule. The HIPAA rule, as enacted, is in fact less stringent with respect to consent than the Minnesota consent law. On the other hand, the Minnesota consent law has not been effectively applied or enforced. As we change the way we manage sensitive medical information, new efforts are needed to provide protection against the confidentiality risks in research. Patient consent is an important tool in this regard. New instrumentalities are needed to solicit and document consent. (shrink)

I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research:(1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are (...) unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research. (shrink)

The concept of privacy by design is becoming increasingly popular among regulators of information and communications technologies. This paper aims at analysing and discussing the ethical implications of this concept for personal health monitoring. I assume a privacy theory of restricted access and limited control. On the basis of this theory, I suggest a version of the concept of privacy by design that constitutes a middle road between what I call broad privacy by design and narrow (...) privacy by design. The key feature of this approach is that it attempts to balance automated privacy protection and autonomously chosen privacy protection in a way that is context-sensitive. In personal health monitoring, this approach implies that in some contexts like medication assistance and monitoring of specific health parameters one single automatic option is legitimate, while in some other contexts, for example monitoring in which relatives are receivers of health-relevant information rather than health care professionals, a multi-choice approach stressing autonomy is warranted. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised (...) by other well-understood data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

Background Respect for patients’ autonomy is usually considered to be an important ethical principle in Western countries; privacy is one of the implications of such respect. Healthcare professionals frequently encounter ethical dilemmas during their practice. The past few decades have seen an increased use of courts to resolve intractable ethical dilemmas across both the developed and the developing world. However, Chinese and American bioethics differ largely due to the influence of Chinese Confucianism and Western religions, respectively, and there is (...) a dearth of comparative studies that explore cases of ethical dilemmas between China and the United States. Methods This paper discusses four typical cases with significant social impact. First, it compares two cases concerning patient privacy: the “Shihezi University Hospital Case”, in which a patient was used as a clinical teaching object without her permission, and the “New York-Presbyterian Hospital Case”, in which the hospital allowed the filming of a patient’s treatment without his consent. Second, it compares two cases regarding patient autonomy and potentially life-saving medical procedures: the “Case of Ms. L”, concerning a cohabitant’s refusal to sign a consent form for a pregnant woman’s caesarean, and the “Case of Mrs. V”, concerning a hospital’s insistence upon a blood transfusion for a dissenting patient. This paper introduces the supporting and opposing views for each case and discusses their social impact. It then compares and analyses the differences between China and the United States from cultural and legislative perspectives. Conclusions Ethical dilemmas have often occurred in China due to the late development of bioethics. However, the presence of bioethics earlier in the US than in China has not spared the US of ethical dilemmas. This paper highlights lessons and inspiration from the cases for healthcare professionals and introduces readers to the role and weight of privacy and autonomy in China and in the US from the perspectives of different cultures, religions and laws. (shrink)

This article raises the question of whether in both the United States and in France, an individual’s autonomy and private decision-making right in matters of health care and access to reproductive technologies can be conciliated with the general interest, and more specifically, the role of the State. Can a full-fledged right to privacy, the ability to exercise one’s autonomy, exist alongside the general interest, and depend neither on financial resources like in the United States nor on centralised government decisions (...) or the medical hierarchy like in France? The contrast between these two modern democracies justify the importance of comparing them. I will demonstrate that overlaps do exist: the free exercise of religion and opinion, freedom of expression, the inherent value of each individual. What differs, however, are the institutions and how they provide, protect, promote, or frame access to and expressions of these democratic principles. The impact of the global economy, the exposure of people around the world to each other via the internet, and the mirror effects of social media, blogs, and other such forums, have created new perspectives that countries project onto one another. For example, does France now seem to tout ‘autonomy’ as a new and important value because it appears to be an ‘American success story’? Does the United States now seem to value human rights and a social-democratic approach because of the ‘French model’? There seems to be some truth behind these assertions, but as this article will demonstrate, the portrayals of what the ‘right to privacy’ is in the United States and what ‘socialised medicine’ is in France are not necessarily fully accurate. (shrink)

One of the more salient concerns about nanotechnology is the fear that it will harm privacy by collecting personal information and distributing it. This sentiment is complicated by the fact that the specific nanotechnologies that might affect privacy are located more in the near future than in the present, so our knowledge of them is more speculative than empirical. To come to terms with these issues, we will need both knowledge of the science – what is realistic and (...) what is not – and a sense of the on-going discourses on privacy and technology that are likely to frame feelings about nanotech. (shrink)

When information is transformed from what has traditionally been a paper-based format into digitized elements with meaning associated to them, new and intriguing discussions begin surrounding proper and improper uses of this codified and easily transmittable information. As these discussions continue, some health care providers, insurers, laboratories, pharmacies, and other healthcare stakeholders are creating and retroactively digitizing our medical information with the unambiguous endorsement of the federal government.Some argue that these enormous databases of medical information offer improved access (...) to timely information, evidence-based treatments, and complete records from which to provide care. To the extent that these claims are true, it would seem that this is a valuable asset that offers immeasurable benefit to all. Others believe this digitization to be an egregious invasion of privacy. In this article, I investigate the broad research questions of whether the public good aspect of capturing private health information outweighs individual interests and whether it is ethical to mandate participation in health information exchanges by all individuals who use the U.S. health system. (shrink)

In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, (...) however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (shrink)

The nurse asks the ethics consultant what can be done to stop the patient’s blogging. R.J.’s messages on the public forum are taking their toll on the care environment and the health care providers...

As the range of conditions for which we can test prenatally expands, society and the medical profession need to develop guidelines about which tests ought to be offered and which ought not to be. Notions of fetal privacy and confidentiality can help to define limits to what parents may reasonably learn about their future child.

Confidentiality is a central bioethical principle governing the provider–patient relationship. Dating back to Hippocrates, new laws have interpreted it for the age of precision medicine and electronic medical records. This is where the discussion of privacy and technology often ends in the scientific health literature when Internet-related technologies have made privacy a much more complex challenge with broad psychological and clinical implications. Beyond the recognised moral duty to protect patients’ health information, clinicians should now advocate a basic (...) right to privacy as a means to safeguard psychological health. The article reviews empirical research into the functions of privacy, the implications for psychological development and the resigned sentiment taking hold regarding the ability to control personal data. The article concludes with a call for legislative, educational and research steps to readjust the equilibrium between the individual and ‘Big Data’. (shrink)

Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they “promote misinformation about vaccines” and for treatment at a German clinic offering unproven cancer treatments (...) due to “the need to make sure people are equipped to make well‐informed decisions.” GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms. (shrink)

Ethical considerationsThe study was conducted according to the principles of Declaration of Helsinki, and was approved by the Norwegian Social Science Data Services.ObjectiveTo describe patients’ experiences of staying in multiple- and single-bed rooms.Patients and methodsThis qualitative study employed a descriptive and exploratory approach, and systematic text condensation was used to analyze the material. Data were collected in a hospital trust in Norway. A total of 39 in-depth interviews were performed with patients discharged from the medical, surgical, and maternity departments.ResultsPatients (...) had ambiguous views on whether multiple-bed rooms or single-bed rooms were to be preferred. Main results include how patients cherished “the importance of others” but at the same time valued “the importance of privacy.” Being hospitalized in multiple-bed rooms was for many patients a very positive experience in terms of social interaction. Patients in single-bed rooms reported being more dependent on nurses to maintain social contact and obtain safety.ConclusionThis research provides new knowledge on how the need for privacy can be in contradiction with the need for socializing with other patients. When hospitalized, the physical structure of a hospital impacts with whom patients interact and to what extent they depend on the nursing staff to have their social needs met. (shrink)

Biobanks, collecting human specimen, medical records, and lifestyle-related data, face the challenge of having contradictory missions: on the one hand serving the collective welfare through easy access for medical research, on the other hand adhering to restrictive privacy expectations of people in order to maintain their willingness to participate in such research. In this article, ethical frameworks stressing the societal value of low-privacy expectations in order to secure biomedical research are discussed. It will turn out that (...) neither utilitarian nor communitarian or classical libertarian ethics frameworks will help to serve both goals. Instead, John Rawls’ differentiation of the “right” and the “good” is presented in order to illustrate the possibility of “serving two masters”: individual interests of privacy, and societal interests of scientific progress and intergenerational justice. In order to illustrate this counterbalancing concept with an example, the five-pillar concept of the German Ethics Council will be briefly discussed. (shrink)

Ethics of privacy is not a new but rather well developed topic especially in such areas as medical ethics and genome research. However it is safe to say that this problem is far less explored in moral philosophy. Namely there is a lack of consensus on Meta ethical status of privacy as moral value. This essay suggests some clarifications on the notion of privacy in the ethics of ICT and considers possible approaches to research on (...) class='Hi'>privacy issues in ethics. Moral relativism suggests that privacy is a conventional value and it is possible to accept that it may become obsolete if confronted with changing social and cultural environment. Such approach also contributes to the view that privacy is an individual value and it may come in contradiction with societal values. Naturalistic approach on the other hand suggests that privacy is a value intrinsic to human nature, as it is deeply interrelated with phenomena of self-identity. Thus privacy is a crucial value not only to individual but to society as well. (shrink)

In Rites of Privacy and the Privacy Trade Neill constructs an original theory of natural rights and human dignity to ground our right to privacy, arguing that privacy and autonomy are innate natural properties metaphorically represented on the moral level and socially bestowed. She develops her position by drawing on works in history, sociology, metaphor, law, and the moral psychology of Lawrence Kohlberg. The resulting theory provides surprising answers to controversial and pressing questions regarding, for instance, (...) our right to privacy for medical records in various contexts and in relation to various authority structures, including government. Neill demonstrates that, while we have some entitlement to protection of privacy, entitlement does not have the moral scope suggested by currently entrenched legal and social norms. She cautions against some of the privacy privileges we currently enjoy - referring specifically to claims such as those against insurance companies to prevent access to medical records - and suggests that if they are to be continued, respect for privacy is not the reason. (shrink)