Confidentiality in Medicine

There is an ongoing debate in medicine about whether patients have a ‘right not to know’ pertinent medical information, such as diagnoses of life-altering diseases. While this debate has employed various ethical concepts, probably the most widely-used by both defenders and detractors of the right is autonomy. Whereas defenders of the right not to know typically employ a ‘liberty’ conception of autonomy, according to which to be autonomous involves doing what one wants to do, opponents of the right not to (...) know often employ a ‘duty’ understanding, viewing autonomy as involving an obligation to be self-governing. The central contribution of this paper is in showing that neither view of autonomy can reasonably be said to support the extreme stances on the right not to know that they are sometimes taken to. That is, neither can a liberty view properly defend a right not to know without limits, nor can a duty view form the basis of an absolute rejection of the right not to know. While there is still theoretical distance between these two approaches, we conclude that the views are considerably closer on this issue than they first appear, opening the way for a possible compromise. (shrink)

Response to commentaries on 'The right not to know and the obligation to know'.

There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that (...) a patient has an obligation to know that she does not also have a right not to know. The right not to know is held against medical professionals at a formal institutional level. We have reason to protect patients’ control over the information that they receive, even if in individual instances patients exercise this control in ways that violate obligations. (shrink)

Medical practitioners are duty-bound to tell their patients the truth about their medical conditions, along with the risks and benefits of proposed treatments. Some patients, however, would rather not receive medical information. A recent response to this tension has been to argue that that the disclosure of medical information is not optional. As such, patients do not have permission to refuse medical information. In this paper I argue that, depending on the context, the disclosure of medical information can undermine the (...) patient’s ability to exercise her autonomy or have therapeutically detrimental effects. In the light of these insights I go on to develop a context-sensitive approach to medical disclosure. The advantage of this account is that it addresses concerns on both sides of the debate; whilst it acknowledges that patients do not have an exercisable ‘right not to know,’ it allows that in some cases medical information ought to be withheld. (shrink)

Hunger strikes potentially present a serious challenge for attending physicians. Though rare, in certain cases, a conflict can occur between the obligations of beneficence and autonomy. On the one hand, physicians have a duty to preserve life, which entails intervening in a hunger strike before the hunger striker loses his life. On the other hand, physicians’ duty to respect autonomy implies that attending physicians have to respect hunger strikers’ decisions to refuse nutrition. International medical guidelines state that physicians should follow (...) the strikers’ unpressured advance directives. When physicians encounter an unconscious striker, in the absence of reliable advance directives, the guidelines advise physicians to make a decision on the basis of the patient’s values, previously expressed wishes, and best interests. I argue that if there are no advance directives and the striker has already lost his competence, the physician has the responsibility to resuscitate the striker. Once the striker regains his decision-making capacity, he should be asked about his decision. If he is determined to continue fasting and refuses treatment, the physician has a moral obligation to respect this decisions and follow his advance directives. (shrink)

The use of assisted reproductive technology is becoming more and more common nowadays and the procedures that a few years ago would be seen as experimental have now become basic benefits. The present text covers the issues of risks and conflicts faced by family members and related with the use of technology in the process of conceiving and giving birth to a child. The authors pay special attention to the possible use of foreign germ cells in the conception of a (...) child. The article aims to demonstrate that the use of modern and advanced medical technology in health care in the field of medically assisted procreation may be seen as a benefit for the family, which satisfies the desire to have a child, but in the long run it may give rise to legal or psychological problems as well. The authors examine the draft on the infertility treatment. (shrink)

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when (...) principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest. (shrink)

Some ethicists argue that patient confidentiality is absolute and thus should never be broken. I examine these arguments that when critically scrutinised, become porous. I will explore the concept of patient confidentiality and argue that although, this is a very important medical and bioethical issue, this needs to be wisely delivered to reduce third party harm or even detriment to the patient. The argument for absolute confidentiality is particularly weak when it comes to genetic information and inherited disease.

The ramifications of including genetic components in the clinical studies conducted in non-academic settings create unique ethical challenges. We used a qualitative research design consisting of semi-structured interviews that took place between October 2010 and September 2012. The sample consisted of 80 participants − 38 physicians and 42 coordinators − who worked across a number of different settings, including clinics, private practices, small hospitals, free standing research centers, and blended hospital-institutes in both rural and urban communities in 13 states across (...) the United States. The respondents primarily conducted industry sponsored trials and recruited their own patients as research participants. A majority of the respondents (65%) reported that most of the studies they conducted included an additional genetics component, and so participants were asked to donate specimens for genomics or biobanking. While genomics association studies were perceived as being of benefit, awareness of ethical implications associated with such studies was limited. The rapid advances in genetic technologies make it hard for clinicians and coordinators to help patients make informed decisions about participating in clinical research, and underscore the need to ensure that the regulations governing research on human subjects keep pace with the social and technological changes. It seems essential to discern legitimate ethical concerns and find ways to convey what is going on, what is possible and what might not be possible in terms of protecting privacy, anonymity, and confidentiality. (shrink)

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to (...) Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (shrink)

Mandeville and colleagues describe a fascinating case where Facebook was used to warn potential contacts that their acquaintance had a communicable disease (Mandeville et al., 2013). They are correct that this case raises important issues about social media, confidentiality and the prevention of harm. However, they underestimate both the dangers of overcommunication via Wall and Timeline postings (and Twitter) and the potential utility of Facebook in cases like this one. Increased awareness of Facebook functionality will allow more accurate targeting of (...) those at risk of infection, while also protecting the confidentiality of the index case. (shrink)

The paper argues in favor of bioethics as an alternative to traditional medical ethics. Relations between the patient and the doctor placed in the bioethical context are considered as a part of more general, global issues: relations between clients, customers, various (including non-medical) services and the professional medical community and society in general, world-renowned scientists and the international community. Medical ethics is seen in the wider expanse of diverse economic, political and cultural relations not only in terms of responsibilities but (...) also natural rights which all people have without exception and with regard to professional identity. In contrast to traditional medical ethics, bioethics not only encourages one to reconsider the content of human morality, which is built on interpersonal relations, but also shows that disease and health are not merely medical phenomena. In this situation, paramount importance is assigned to interests of the client and society rather than medical corporations. Such a transformation of medical theory and practice requires public discussion of professional ethics issues and external regulation control. There is a need to develop ethical criteria for medical activity not only at the national but also international, or even global, levels, as well as criteria for long-term effects of highly technological professional medical practice. Bioethics expands the boundaries of professional medical ethics and ethical reflection of its normative foundations as it carries out both internal (code of ethics) and external (ethics committees and commission) “regulation” of professional practice. The purpose of bioethics is the preservation and development of life represented not only by man but also other creatures, which has never been on the agenda of medical ethics. (shrink)

A major issue facing the health of young adults in the United States is the often unintentional lack of confidentiality maintained in the provision of sensitive health services. Of primary concern is that young adults who remain on their parents' health insurance plans forgo Sexually Transmitted Infection screening and treatment, as well as other sensitive services such as family planning services and mental health treatment out of a concern that explanation of benefit forms from such services will inform their parents, (...) the policyholders. The challenges of providing confidential health care to young adults have become more prominent and concerning following the passage of the Affordable Care Act, as adult children can now remain on their parents' plans until the age of 26. While this change will grant more young adults access to health care services, ensuring confidential care remains a challenge whenever the parent and not the patient is the policyholder. This article discusses these serious challenges and offers potential solutions to ensuring confidentiality for specific services for young adults. (shrink)

Background The consistency of codes governing disclosure of terminal illness to patients and families in Islamic countries has not been studied until now. Objectives To review available codes on disclosure of terminal illness in Islamic countries. Data source and extraction Data were extracted through searches on Google and PubMed. Codes related to disclosure of terminal illness to patients or families were abstracted, and then classified independently by the three authors. Data synthesis Codes for 14 Islamic countries were located. Five codes (...) were silent regarding informing the patient, seven allowed concealment, one mandated disclosure and one prohibited disclosure. Five codes were silent regarding informing the family, four allowed disclosure and five mandated/recommended disclosure. The Islamic Organization for Medical Sciences code was silent on both issues. Conclusion Codes regarding disclosure of terminal illness to patients and families differed markedly among Islamic countries. They were silent in one-third of the codes, and tended to favour a paternalistic/utilitarian, family-centred approach over an autonomous, patient-centred approach. (shrink)

Heath services come with the promise of confidentiality.1 The ethical mandate to safeguard the confidentiality of personal health information aligns with legal mandates to do the same. Numerous state and federal laws demand one form of health data confidentiality or another, best illustrated by the Health Insurance Portability and Accountability Act.2 In early 2011, the Department of Health and Human Services decided to take a tougher stand against HIPAA violators, utilizing powers created by the Health Information Technology for Economic and (...) Clinical Health Act.3 Ushering in a new era, the U.S. Department of Health and Human Services imposed an unprecedented civil penalty of $4.3 million on Cignet Health of .. (shrink)

The Patient Protection and Affordable Care Act of 2010 (ACA) contains many provisions intended to increase access to and lower the cost of health care by adopting public health measures. One of these promotes the use of at-work wellness programs by both providing employers with grants to develop these programs and also increasing their ability to tie the price employees pay for health insurance for participating in these programs and meeting specific health goals. Yet despite ACA's specific alteration of three (...) different statues which had in the past shielded employees from having to contribute to the cost of their health insurance based on their achieving employer-designated health markers, it chose to leave alone recently enacted rules implementing the Genetic Non-Discrimination Act (GINA), which prohibits employers from asking employees about their family health history in any context, including assessing their risk for setting wellness targets. This article reviews how both the changes made by ACA and the restrictions recently put place by GINA will affect the way employers are likely to structure Wellness Programs. It also considers how these changes reflect the competing social goals of both ACA, which seeks to expand access to the population by lowering costs, and GINA, which seeks to protect individuals from discrimination. It does so by analyzing both positive theories about how these new laws will function and normative theories explaining the likelihood of future friction between the interests of the population of the United States as a whole who are in need of increased and affordable access to health care, and of the individuals living in this country who risk discrimination, as science and medicine continue to make advances in linking genetic make-up to risk of future illness. (shrink)

It will be of value to medics and social scientists, human tissue researchers, and policy makers who have an interest in ethical and legal issues of human tissue research.

The American Journal of Bioethics, Volume 11, Issue 11, Page 44-45, November 2011.

Objective To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes. Design Cross-sectional survey. Study population Adult Egyptian patients (n=600) at rural and urban hospitals and clinics. Results Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should (...) include the option that future research be restricted to the illness being studied. A slight majority (66.2%) would donate their samples for future genetic research. Respondents were more favourable towards having their blood samples exported to other Arab countries (62.0%) compared with countries in Europe (41.8%, p<0.001) and to the USA (37.2%, p<0.001). Conclusions This study shows that many individuals do not favour the donation of a blood sample for future research. Of those who do approve of such future research, many favour a consent model that includes an option restricting the future research to the illness being studied. Also, many Egyptians were hesitant to have their blood samples donated for genetic research or exported out of the Arab region to the USA and European countries. Further qualitative research should be performed to determine the underlying reasons for many of our results. (shrink)

Several bioethical topics received a great deal of news coverage here in Scotland in 2009. Three important issues with transatlantic connections are the swine flu outbreak, which was handled very differently in Scotland, England and America; the US debate over healthcare reform, which drew the British NHS into the controversy; and the release to Libya of the Lockerbie bomber, which at first glance might not seem particularly bioethical, but which actually hinged on the very public discussion of the prisoner’s medical (...) records. On a national level, there have been attempts in both Scotland and England to change the law on assisted suicide, where success looks more likely than ever. This paper will discuss each of these issues, and hopefully raise awareness of how these issues were dealt with in the UK and its component countries. (shrink)

Currently, any dentist in the UK who is HIV-seropositive must stop treating patients. This is despite the fact that hepatitis B-infected dentists with a low viral load can continue to practise, and the fact that HIV is 100 times less infectious than hepatitis B. Dentists are obliged to treat HIV-positive patients, but are obliged not to treat any patients if they themselves are HIV-positive. Furthermore, prospective dental students are now screened for hepatitis B and C and HIV, and are not (...) allowed to enrol on Bachelor of Dental Surgery degrees if they are infectious carriers of these diseases. -/- This paper will argue that: (i) the current restriction on HIV-positive dentists is unethical, and unfair; (ii) dentists are more likely to contract HIV from patients than vice versa, and this is not reflected by the current system; (iii) the screening of dental students for HIV is also unethical; (iv) the fact that dentists can continue to practise despite hepatitis B infection, but infected prospective students are denied matriculation, is unethical; and (v) that the current Department of Health protocols, as well as being intrinsically unfair, have further unethical effects, such as the waste of valuable resources on ‘lookback’ exercises and the even more damaging loss of present and future dentists. Regulation in this area seems to have been driven by institutional fear of public fear of infection, rather than any scientific evidence or ethical reasoning. (shrink)

Western laws and codes of ethics frequently require that private health information be treated confidentially. However, cross-cultural research shows that it is not always easy to determine what members of a culture consider to be private or how they wish private information to be handled. This article begins by presenting an ethnographic study of patient-healer relationships in Sri Lanka; researchers were surprised to find that participants' views of health and privacy differed greatly from typical Western views, and that the privacy (...) protections they had put in place caused discomfort among participants. Building on this ethics case study, the article explores two main questions. First, can a single definition of privacy possibly do justice to the cultural variations that exist, or does a conceptual definition inevitably run the risk of ethnocentrism? Second, to what extent is strict compliance with research regulations or ethics codes ethically justifiable when following the rules will obviously cause unease in international participants? (shrink)

Confidentiality in psychological counseling is necessary if clients are to feel comfortable in revealing their darkest secrets. But this bond of trust has its moral limits. These limits are crossed in some cases in which HIV positive clients are sexually active with unsuspecting third parties. Distinguishing between Type 1 and Type 2 cases, the author shows how he has used applied ethics in drafting and defending a model rule for the American Counseling Association’s Code of Ethics that permits, and sometimes (...) morally requires disclosure in the former cases, but not in the latter. (shrink)

Confidentiality is one of the foundations on which psychotherapy is built. Limitations on confidentiality in the therapeutic process have been explained and explored by many authors and organizations. However, controversy and confusion continue to exist with regard to the limitations on confidentiality in situations where clients are considering their options at the end of life and after a client has died. This article reviews these 2 areas and provides some suggestions for future research.

Consensus statement by UK teachers of medical ethics and law.

This is an extremely thorough revision of the leading textbook of bioethics. The authors have made many improvements in style, organization, argument and content. These changes reflect advances in the bioethics literature over the past five years. The most dramatic expansions of the text are in the comprehensiveness with which the authors treat different currents in ethical theory and the greater breadth and depth of their discussion of public policy and public health issues. In every chapter, readers will find new (...) material and refinements of old discussions. This is evident in the many new sections on topics like communitarianism, ethics of care, relationship-based accounts, casuistry, case-based reasoning, principle-based common-morality theories, the justification of assistance in dying, rationing through priorities in the health care budget, and virtues in professional roles. The most extensive revisions are in chapters 1, 2 and 8. (shrink)

This article uses a case study to examine the conflicting rights of the patient to know a clinician;s HIV status and the clinician's right to privacy.

The AIDS epidemic calls for an ethical analysis of conflicting obligations surrounding HIV-infected psychiatric patients and confidentiality, as well as issues that go beyond confidentiality. Although laws pertaining to HIV infection have been enacted in a number of states, these statutes leave much discretion to health professionals. The ethical principle known as "the harm principle" can permit disclosure of confidential information and detention or isolation of psychiatric patients who pose a threat of infecting other patients. From an ethical point of (...) view, however, the circumstances under which traditional protections may be weakened or abandoned remain limited. (shrink)

A doctor has duties towards his patients of both confidentiality and veracity and at times these may conflict, as in the following case. A mother who has the symptoms of Huntington's chorea does not wish her daughters to know. The doctor must try to make her realise how valuable the information can be to the daughters, and thus obtain her consent to inform them. If the mother's consent cannot be obtained, then the doctor must tell the mother that he cannot (...) allow her attitude to deprive the daughters of this information, especially at this crucial time as they plan to have children. The well-being of the daughters' future families must take precedence over the mother's desire for secrecy regarding her condition. (shrink)

This edition represents a thorough-going revision of what has become a classic text in biomedical ethics. Major structural changes mark the revision. The authors have added a new concluding chapter on methods that, along with its companion chapter on moral theory, emphasizes convergence across theories, coherence in moral justification, and the common morality. They have simplified the opening chapter on moral norms which introduces the framework of prima facie moral principles and ways to specify and balance them. Together with the (...) shift of advanced material on theory to the back of the book, this heavily revised introductory chapter will make it easier for the wide range of students entering bioethics courses to use this text. Another important change is the increased emphasis on character and moral agency, drawing the distinction between agents and actions. The sections on truth telling, disclosure of bad news, privacy, conflicts of interest, and research on human subjects have also been throughly reworked. The four core chapters on principles and the chapter on professional-patient relationships retain their familiar structure, but the authors have completely updated their content to reflect developments in philosophical analysis as well as in research, medicine, and health care. Throughout, they have used a number of actual cases to illuminate and to test their theory, method, and framework of principles. (shrink)

This classic essay on the responsibilities of a doctor was first published in New York in 1769. It remains a perfect gift for a young doctor just starting out or for one who is older and wiser. This classic will be an inspiration to any who read its timeless message.