In the European Union, the General Data Protection Regulation (GDPR) provides comprehensive rules for the processing of personal data. In addition, the EU lawmaker intends to adopt specific rules to protect confidentiality of communications, in a separate ePrivacy Regulation. Some have argued that there is no need for such additional rules for communications confidentiality. This Article discusses the protection of the right to confidentiality of communications in Europe. We look at the right’s origins to assess the rationale (...) for protecting it. We also analyze how the right is currently protected under the European Convention on Human Rights and under EU law. We show that at its core the right to communications confidentiality protects three individual and collective values: privacy, freedom of expression, and trust in communication services. The right aims to ensure that individuals and organizations can safely entrust communication to service providers. Initially, the right protected only postal letters, but it has gradually developed into a strong safeguard for the protection of confidentiality of communications, regardless of the technology used. Hence, the right does not merely serve individual privacy interests, but also other more collective interests that are crucial for the functioning of our information society. We conclude that separate EU rules to protect communications confidentiality, next to the GDPR, are justified and necessary. (shrink)

Community based research is conducted by, for, and with the participation of community members, and aims to ensure that knowledge contributes to making a concrete and constructive difference in the world (The Loka Institute 2002). Yet decisions about research ethics are often controlled outside the research community itself. In this analysis we grapple with the imposition of a community confidentiality clause and the implications it had for consent, confidentiality, and capacity in a province-wide (...) class='Hi'>community based research project. Through untangling these implications we provide recommendations for reframing how to think about research ethics and strategies for enabling research ethics’ processes to be more responsive to and respectful of community-based research. (shrink)

For the purposes of this article, the right to confidentiality of communications between a lawyer and a client (legal professional privilege) is analysed and understood as a rule under which, in judicial or administrative proceedings, the content of communications between a lawyer and his client shall not be disclosed; if this rule is breached, the content of the communications in question is not treated as evidence in the process. Legal professional privilege is related to several articles of the Convention (...) for the Protection of Human Rights and Fundamental Freedoms. The European Court of Human Rights has found that the violation of the right of an accused to communicate with a lawyer without a third party departs from Article 6(3)(c) of the Convention for the Protection of Human Rights and Fundamental Freedoms which entitles to defend oneself in person or through a legal assistant. This kind of communication also relates to the Article 8 of the Convention, which provides a right to respect for private and family life, home and correspondence. In the opinion of the European Court of Human Rights, according to the Convention for the Protection of Human Rights and Fundamental Freedoms there is no difference if a lawyer representing a client is a practitioner or not. However, when dealing with the violations of EU competition law, the Court of Justice of the European Union acknowledges the protection of legal professional privilege only with regard to the communications between an accused companies and an independent lawyer (who does not work for his client on an employment contract basis). When the protection of legal professional privilege is not granted for communications of the accused company with its own legal personnel, a question may arise whether it is considered that sufficient level of confidentiality is ensured for these companies. (shrink)

This article is in a larger textbook of articles on Medical Ethics. It identifies a number of values that underlie professional commitments to confidentiality that are involved in protecting or promoting the client's (1) privacy, (2)social status, (3) economic advantages, (4) openness of communications, (5) seeking professional help, (6) trust in professionals, (7) autonomous control over personal information. The problem of making exceptions to confidentiality commitments is also examined.

This paper demonstrates how ubuntu relational philosophy may be used to ground beneficial coercive care without necessarily violating a patient’s dignity. Specifically, it argues that ubuntu philosophy is a useful theory for developing necessary conditions for determining a patient’s potential dangerousness; setting reasonable limits to the duty to protect; balancing the long-term good of providing unimpeded therapy for patients who need it with the short-term good of protecting at-risk parties; and advancing a framework for future case law and appropriate regulations (...) in the care of psychotherapy patients. Issues regarding the decision to breach medical confidentiality in psychotherapeutic care are ultimately reserved for the courts. Professional assessment might be an important first step in this process, and court rulings govern most aspects of this assessment. However, current case law, especially in the United States, places an unreasonable expectation on psychotherapists to protect all at-risk parties or foresee that a patient intends to follow through on said threats. It has largely failed to guarantee psychotherapy patients unlimited access to care, while potentially inhibiting future honest communication between patients and health professionals and endangering the safety of others. Of these decisions, the two most prominent are the 1976 Tarasoff decision and the 2016 Volk decision. This paper argues for the possibility of grounding good laws in ubuntu African philosophy in a way that protects others from harm and ensures unimpeded access to care without necessarily breaching medical confidentiality. (shrink)

The importance of medical confidentiality is obvious to anyone who has ever been a patient, and protecting private information about patients is one of the key responsibilities of healthcare professionals. However, maintaining the confidentiality of patients who are incarcerated in prisons poses several ethical challenges. In this chapter we explain the importance of confidentiality in general, and the dilemmas that sometimes face doctors with regard to it, before describing some of the specific difficulties faced by prison doctors. (...) Although healthcare professionals working in prisons have the same duty to respect confidentiality as those working in the wider community, the conflicts of interest caused by their dual loyalty to prisoners and to prison authorities can make it very difficult to strike the right balance between respecting confidentiality and protecting prisoners and third parties. We illustrate some of the dilemmas facing prison doctors with a series of case discussions before providing suggestions for resolving these difficult situations. Ideally, a combination of great ethical and legal sensitivity on the part of healthcare professionals and general respect for prisoners’ rights on the part of other prison staff enables most issues to be resolved without the need to compromise patients’ confidentiality. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...) a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

Qualitative fieldwork research on sensitive topics sometimes requires that interviewees be granted confidentiality and anonymity. When qualitative researchers later publish their findings, they must ensure that any statements obtained during fieldwork interviews cannot be traced back to the interviewees. Given these protections to interviewees, the integrity of the published findings cannot usually be verified or replicated by third parties, and the scholarly community must trust the word of qualitative researchers when they publish their results. This trust is fundamentally (...) abused, however, when researchers publish articles reporting qualitative fieldwork data that they never collected. Using only publicly available information, I argue that a 2017 article in an Elsevier foreign policy and international relations journal presents anonymised fieldwork interviews that could not have occurred as described. As an exercise in post-publication peer review (PPPR), this paper examines the evidence that calls into question the reliability of the putative fieldwork quotations. I show further that the 2017 article is not a unique case. The anonymity and confidentiality protections common in some areas of research create an ethical problem: the protections necessary for obtaining research data can be used as a cover to hide substandard research practices as well as research misconduct. (shrink)

This book focuses the collective attention of psychotherapists, the legal community, social scientists, and ethicists on the moral, legal, and clinical problems of confidentiality in psychotherapeutic practice. By providing timely and important interdisciplinary contributions, the book opens the way to understanding, if not resolving, the conflicting interests and values at stake in the debate on confidentiality.

Respecting and protecting the confidentiality of data and the privacy of individuals regarding the information that they have given as participants in a research project is a cornerstone of complying with accepted research standards. However, in longitudinal studies, establishing and maintaining privacy is often challenging because of the necessity of repeated contact with participants. A novel internet-based solution is introduced here, which maintains privacy while at the same time ensures linkage of data to individual participants in a repeated measures (...) design. With the use of the anonymous repeated measurements via email (ARME) procedure, two separate one-way communication systems are established through ad hoc email accounts and a secure study website. Strengths and limitations of the approach are discussed. (shrink)

Ethical issues regarding research biobanks continue to be a topic of intense debate, especially issues of confidentiality, informed consent, and child participation. Although considerable empirical literature concerning research biobank ethics exists, very little information is available regarding the opinions of medical professionals doing genetics research from the Middle East, especially Arabic speaking countries. Ethical guidelines for research biobanks are critically needed as some countries in the Middle East are starting to establish national research biobanks. Islam is the dominant religion (...) in these countries, and it affects people’s behavior and influences their positions. Moreover, communities in these countries enjoy a set of customs, traditions and social norms, and have social and familial structures that must be taken into account when developing research policies. We interviewed 12 medical professionals from the Middle East currently working with stored tissue samples to document their opinions. We found general agreement. Participants’ primary concerns were similar to the views of researchers internationally. Since children tend to represent a high percentage of Middle Eastern populations, and because children’s bodies are not just small adult bodies, the interviewed professionals strongly believed that it is imperative to include children in biobank research. Participants generally believed that protecting confidentiality is socially very important and that informed consent/assent must be obtained from both adult and child participants. This study provides a starting point for additional studies. (shrink)

Mr Ridley of the Watch Tower Society , the controlling religious organisation of Jehovah's Witnesses , mischaracterises the issue of freedom and confidentiality in JWs' refusal of blood by confusing inconsistent organisational policies with actual Biblical proscriptions. Besides exaggeration and distortion of my writings, Ridley failed to present substantive evidence to support his assertion that no pressure exists to conform to organisational policy nor systematic monitoring which compromises medical confidentiality. In this refutation, I present proof from the WTS's (...) literature, supported by personal testimonies of JWs, that the WTS enforces its policy of blood refusal by coercive pressure to conform and through systematic violation of medical confidentiality. Ridley's lack of candour in dealing with the plea of dissident JWs for freedom to make personal and conscientious decisions regarding blood indicates that a serious breach of ethics in the medical care of JWs continues. The medical community should be seriously concerned. (shrink)

In the March 1982 issue of the Journal Dr Pheby, a community health doctor, was one of several writers to discuss medical confidentiality. Dr Pheby urged doctors to minimise subjective and judgmental comments in medical records and to make clear when their assessments were speculative. He also urged `vigorous reappraisal of the extent to which information about a patient needs to be circulated' to members of other disciplines, for instance, in child health practice. If doctors did not take (...) such steps themselves legal changes might well be imposed upon them, giving patients the right of access to their medical records and perhaps making breach of medical confidentiality a criminal offence. Mr Jacob, a lawyer, commenting on the papers by Dr Pheby and Mr Kenny, a health administrator, argued that increased legal intervention in medical ethics could quite possibly actually erode traditional medical ethical standards of confidentiality based on peer review and `the ethic of virtue'. (shrink)

The global demand for information has brought in new developments in the publicity of discursive practices of many professional areas. This study takes the professional practice of International Commercial Arbitration, a mechanism to resolve business disputes outside the courts and traditionally considered as private, to explore the process of resemiotization of information, from the strategies used by corporations in their press releases to the news reports published by national and international media. It takes the theoretical concept of interdiscursivity in critical (...) genre analysis to show that texts are the result of a combination of a very complex range of resources brought about by genres, professional practices and professional cultures, which derive not only from the ‘local’ representation of the transnational arbitration process, but also from the different corporate identities and their ways of coping with the increasing publicity of the facts of arbitration. (shrink)

Background: By providing healthcare to adolescents, a major opportunity is created to help them cope with the challenges in their lives, develop healthy behaviour and become responsible healthcare consumers. Confidentiality is a major issue in adolescent healthcare, and its perceived absence may be the main barrier to an adolescent seeking medical care. Little is known, however, about confidentiality for adolescents in primary care practices in Spain.Objective: To ascertain the attitudes of Spanish family doctors towards the right of adolescents (...) to confidentiality in different healthcare situations and in the prescription of treatment.Method: A descriptive postal questionnaire was self-administered by family doctors.Results: Parents of patients under 18 years are always informed by 18.5% of family doctors, whereas parents of those under 16 years are informed by 38.8% of doctors. The patients are warned of this likelihood by 79.3% of doctors. The proportion of doctors supporting confidentiality for adolescents increases with the age and maturity of the patients, whereas workload and previous training has a negative effect.Conclusions: Spanish laws on adolescent healthcare are not reflected by the paternalistic attitude that Spanish primary care doctors have towards their adolescent patients. Doctors need to be provided with up-to-date and clinically relevant explanations on contemporary legal positions. In primary care, more attention should be paid to adolescents’ rights to information, privacy and confidentiality. Doctors should be more aware of the need to encourage communication between teenagers and their parents, while also safeguarding their patients’ rights to confidential care. (shrink)

This study evaluates the conflict between patient confidentiality and partner notification in sero‐discordant relationships, and argues the thesis that based on a theoretical formulation of Ubuntu, a health provider is obliged to facilitate friendly relationships in which individuals are true subjects and/or objects of communal friendship. In serodiscordant relationships, the health professional can fulfil this obligation by notifying “others” (particularly a partner with whom an HIV positive patient has a “present” and “actual relationship”) of their spouse's HIV seroconversion, since (...) without such relevant information a partner (subject) of an HIV positive patient cannot “appropriately” care for the patient's condition (object). There is a need to move away from the medical traditional emphasis that has for so long put primacy on doctor‐patient confidentiality as is the case with the Health Professions Council of South Africa Guidelines (Booklet 12) which favours patient confidentiality over partner notification. Given empirical evidence to support effectiveness of partner notification amongst sero‐discordant couples, there is thus, a need to focus emphasis on latter. This shift is necessary for achieving the United Nations’ Sustainable Development of Goal of ending HIV/AIDS epidemic by 2030. I proposed in this study that African ethics, specifically Ubuntu, will do a better job than current ethical frameworks at ensuring that partner notification receives more emphasis in the care of serodiscordant couples. If this framework is integrated into ethical guidelines and codes, it would significantly enhance the care of serodiscordant couples, as well as further boost global effort at ending HIV/AIDS epidemic by 2030. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery system would (...) be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

A powerful movement is afoot to create a national computerized system of health records. Advocates claim it could save the health delivery system billions of dollars and improve the quality of health services. According to Lawrence Gostin, a leading commentator on privacy and health records, this new infrastructure is “already under way and [has] an aura of inevitability.” When it is in place, almost any information that is viewed as relevant to a decision in the health care delivery system would (...) be available to a large and yet undetermined number of individuals. The transformation of the collection and communication of health information from texts housed by health care providers and facilities to data electronically transmitted through networks of linked computers has significant implications for confidentiality and for data collection in scientific research. The best evidence clearly indicates that most people in the United States consider confidentiality for health information important and worry that the increased computerization of health records will result in inappropriate disclosure. (shrink)

Discussions on the right to privacy usually involve persons in the Lockean sense. However, psychological properties that make up the person can be lost due to neurodegenerative diseases, cerebral tumors or trauma. Depending on the severity of the disease or the trauma the patient may end up in PVS or a coma. In this article the privacy rights of these patients will be discussed. In light of two examples − the publication of photographs showing Bülent Ecevit and Barış Akarsu in (...) a coma − it will be argued that the privacy rights secured by the Turkish Constitution are being violated by the Turkish Press. (shrink)

Women often seek midwifery care as an alternative to the maternity services that are readily available within the insured health care system in Alberta. Some aspects of community-based, primary care midwifery in Alberta that characterize this alternative are the use of story-telling as a form of knowledge, the development of social con nections among women seeking midwifery care, and nonauthoritarian relationships between midwives and women. In this paper, the concept of confidentiality, as it relates to these aspects of (...) midwifery practice, is explored, using traditional, caring and feminist models of ethics. (shrink)

Because of the development towards community care, care providers not only exchange information in a team, but increasingly also in networks. This is a challenge to confidentiality. The ethical question is how care providers can keep information about the care receiver confidential, whilst at the same time exchanging information about that care receiver in a team or network? Can shared confidentiality be extended from a team to a network? To clarify this question, the article refers to the (...) advice of an expert ethics committee in mental health care. The advice regards exchange of information in a network as a further step in enhancing collaboration among care providers. Therefore, the good and evident practice of shared confidentiality in a team can be extended to a network if the same conditions are met. First, the care providers participate in a clearly defined and identifiable team or network. Secondly, they have a shared care responsibility. Thirdly, they have a duty of confidentiality. Fourth, they dialogue with the care receiver and obtain his or her consent. Finally, they apply the filter of relevance. Hence, conditional shared confidentiality is an ethical justification for the exchange of information in a team or network. (shrink)

The principle of individual medical confidentiality is one of the moral principles that Africa inherited unquestioningly from the West as part of Western medicine. The HIV/AIDS pandemic in Southern Africa has reduced the relevance of the principle of individual medical confidentiality. Individual medical confidentiality has especially presented challenges for practitioners among the Bantu communities that are well known for their social inter-connectedness and the way they value their extended family relations. Individual confidentiality has raised several unforeseen (...) problems for persons living with HIV/AIDS, ranging from stigma and isolation to feelings of dejection as it drives them away from their families as a way of trying to keep information about their conditions confidential. The involvement of family members in treatment decisions is in line with the philosophy of Ubuntu and serves to respect patients’ and families’ autonomy while at the same time benefiting the individual patient. (shrink)

Social media applications such as Twitter, YouTube and Facebook have attained huge popularity, with more than three billion people and organizations predicted to have a social networking account by 2015. Social media offers a rapid avenue of communication with the public and has potential benefits for communicable disease control and surveillance. However, its application in everyday public health practice raises a number of important issues around confidentiality and autonomy. We report here a case from local level health protection where (...) the friend of an individual with meningococcal septicaemia used a social networking site to notify potential contacts. (shrink)

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to (...) others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship. (shrink)

Experience with electronic communication in ethics committees at two hospitals is reviewed and discussed. A listserver of ethics committee members transmitted a synopsis of the ethics consultation shortly after the consultation was initiated. Committee comments were sometimes incorporated into the recommendations. This input proved to be most useful in unusual cases where additional, diverse inputs were informative. Efforts to ensure confidentiality are vital to this approach. They include not naming the patient in the e-mail, requiring a password for access (...) to the listserver, and possibly encryption. How this electronic communication process alters group interactions in ethics committees is a fruitful area for future investigation. (shrink)

Data from the 5–6 year control questionnaire of the ABIS study, a Swedish prospective screening of children for Type 1 diabetes, indicates a genuine trust in the researchers—very few participating families expressed concern about their participation. Nevertheless, a majority do not want their research data to be used beyond the agreement of the original consent. They want to be asked for renewed consent in such cases. A vast majority also want potential high-risk information about their child to be communicated to (...) them. Most participating families want this regardless of whether any preventive treatment is available. Although potential benefits for their child is a motivation for participation for a majority of the respondents, they also claim to be motivated by altruistic reasons. These results are compared to results from two similar studies in the UK. (shrink)

Academic bioethics does not appear to be interested in communication and its ethical concerns unless communication is to do with issues such as capacity, consent, truth telling and confidentiality. In contrast practitioners are interested in actually communicating with their patients and they are often particularly perplexed when it comes to people with profound disabilities where communication appears disrupted. Although some new and not so new communication strategies, and especially intensive interaction, are available, little has been written on either the (...) ethical concerns these may present or the deeper concepts that underpin them. This article explores the practical applications of some of these communication strategies. By engaging these strategies with theology, and specifically Pope John Paul’s Theology of the Body, this article identifies and addresses some significant ethical issues that may arise, notably the risk of dualism and of objectifying the human person. Moreover it provides communication strategies with a rationale that goes beyond practicalities to one based on respect for human dignity, justice and solidarity. (shrink)

The present study aims to survey Chinese mental health professionals’ attitudes toward therapeutic confidentiality with adolescent patients in specific clinical situations, and compare Chinese adolescents’ and parents’ beliefs about when most mental health professionals would breach confidentiality. A sample of 36 mental health practitioners, 152 parents, and 164 adolescents completed a survey to assess their opinions about when confidentiality should be breached in 18 specific clinical situations. Nearly half of the parents and adolescents and 78% of the (...) therapists in our sample selected “yes” in response to the question of whether the principle of confidentiality applies to adolescents. However, 49% of parents indicated “no,” and 53% of adolescents indicated “not sure.” Compared to adolescents, parents were significantly more likely to believe that therapists would breach confidentiality for the high-breach-likelihood items. For the low-breach-likelihood items, adolescents and parents were significantly more likely than therapists to believe confidentiality should be breached. Results from this study provide data to inform the development, refinement, practical implementation, and communication of guidelines and recommendations specific to adolescents receiving psychotherapy in China. (shrink)

Community health workers (CHW) are the backbone of the public health system in developing countries. Little is known about the practice of ethics and professionalism in their work. This study was conducted to explore the experiential wisdom of ethics and professionalism among CHWs in Tamil Nadu. We conducted a qualitative study among 125 CHWs in six districts of Tamil Nadu. We found that the CHWs went beyond the call of their duty to do good to the community. Their (...) conceptualization of autonomy ranged from shared to full paternalistic decision making. The CHWs were sensitive to issues of privacy and confidentiality, but the discussion on these topics were limited. They reflected the societal norms of gender, class, and caste hierarchies in their work. They had to work amidst difficult power struggles and had their own innovative strategies to subvert power. In conclusion, there is a need for framing a code of ethics and professionalism for CHWs and training in ethics and professionalism for them to help them effectively deliberate on ethical issues. (shrink)

Context: The need to reinvigorate medical confidentiality protections is recognised as an important objective in building patient trust necessary for successful health outcomes. Little is known about patient understanding and expectations from medical confidentiality.Objective: To identify and describe patient views of medical confidentiality and to assess provisionally the range of these views.Design: Qualitative study using indepth, open ended face-to-face interviews.Setting: Southeastern Pennsylvania and southern New Jersey, USA.Participants: A total of 85 women interviewed at two clinical sites and (...) three community/research centres.Main outcome measures: Subjects’ understanding of medical confidentiality, beliefs about the handling of confidential information and concerns influencing disclosure of information to doctors.Results: The subjects defined medical confidentiality as the expectation that something done or said would be kept “private” but differed on what information was confidential and the basis and methods for protecting information. Some considered all medical information as confidential and thought confidentiality protections functioned to limit its circulation to medical uses and reimbursement needs. Others defined only sensitive or potentially stigmatising information as confidential. Many of these also defined medical confidentiality as a strict limit prohibiting information release, although some noted that specific permission or urgent need could override this limit.Conclusions: Patients share a basic understanding of confidentiality as protection of information, but some might have expectations that are likely not met by current practice nor anticipated by doctors. Doctors should recognise that patients might have their own medical confidentiality models. They should address divergences from current practice and provide support to those who face emotional or practical obstacles to self-revelation. (shrink)

BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

These short cases are intended to stimulate thought or perhaps serve as a useful tool in a classroom or discussion group setting. The cases have been modified to protect confidentiality but do represent real life elements and situations that have been encountered by ACT team staff. Many or most case situations presented may be familiar to ACT Team staff members. Will all ACT team members view each of these as ethical problems? Were others aware that all of these things (...) happen within the clinical milieu of assertive community treatment? (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All (...) study. Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART for All (...) study. Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

BackgroundWhile most studies on HIV/AIDS often identify stigmatization and patients’ unwillingness to access health care as critical problems in the control of the pandemic, very few studies have focused on the possible consequences of accessing health care by sero-positives. This paper examines the socio-psychological trauma patients experience in their desire to access health care in two health facilities in the Ashanti Region of Ghana.MethodsThrough participant observation, informal conversation and in-depth interviews, data were collected from health workers and clients of the (...) voluntary counselling and antiretroviral therapy units in the two hospitals.The data gathered were analysed and categorized into themes and supported with illustrative quotes obtained from health workers and clients.ResultsThe study found that the mere presence of a person at the HIV counselling centre or clinic is enough for the person to be labelled as or suspected to be HIV patient. It demonstrates that stigmatization may occur not only in the community but also overtly or covertly, in the health facility itself. Consequently, for many HIV/AIDS patients, access to antiretroviral therapy and treatment of related nosocomial infections are problematic. Besides, the study found that many clients and potential users of services were uncomfortable with the quality of care given by some health workers, especially as they overtly and covertly breached confidentiality about their clients’ health status. This has compelled many patients and potential users of the services to adopt a modus vivendi that provides them access to some care services while protecting their identity.ConclusionThe paper argues that by examining issues relating to privacy and confidentiality in the provision of care for and use of services by seropositives, more light will be shed on the whys of the limited uptake of HIV-related health care services in Ghana. (shrink)

The paper addresses severalethical issues in online communication researchin light of digital ontology as well as theepistemological questions raised by theblurring boundary between fact and theory inthis field. The concept of ontology is used ina Heideggerian sense as related to the humancapacity of world construction on the basis ofthe givenness of our being-in-the-world.Ethical dilemmas of Internet research thusarise from the tension between bodily existenceand the proper object of research, i.e., onlineexistence. The following issues are beingconsidered: online identity, online language,online consent (...) and confidentiality. We alsoargue that research ethics in the US followsthe utilitarian tradition, while Europeanresearchers are deontologically oriented. Aguideline of best practice in online researchethics is proposed. (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)

In recent years, the research participant’s family’s need, if not right, to know their disease risk has comprised a great deal of the genetic testing discourse. This most often arises in the context of clinical genetic tests for hereditary cancers, especially colorectal and breast cancer, and other genetic disorders where the presence of a genetic mutation greatly increases the likelihood of the disease’s manifestation. However, this discussion has not led to comprehensive or cohesive guidance for health care professionals or patients. (...) Indeed, various governmental and professional bodies run the gamut of possibilities, from no disclosure to family without the consent of the patient, to recognition that genetic risk information is important enough to the family to allow exception to traditional notions of confidentiality. (shrink)

According to the Economic Survey of India, 2012–2013, the real estate sector contributed 5.9 % of the India’s total Gross Domestic Product in the Financial Year 2011–2012, while remaining the second largest employment generator after agriculture in India. The urban population in India is projected to touch 600 million by 2030, from 377 million in 2011, thereby fuelling a housing shortage of around 26 million. However, the perception of Construction industry, like other sectors of the economy, is that of creating (...) “human habitat in a manner generally focussed on profitability without consideration of its long-term impacts.” Under such circumstances, Tata Housing Development Company Limited, a closely held Public Limited Company under 99.86 % subsidiary of Tata Sons, is the first Indian real estate company to have reported the triple bottom-line Global Reporting Initiative G4 Sustainability Reporting Guidelines in its Sustainability Report FY 2013–2014. THDCL aims to volunteer its resources to the extent it can reasonably afford, to sustain the environment and to improve the quality of life of the people of the area in which it operates. This Situational Case Study, targeted towards management students and practitioners, and social and developmental workers in the areas of Corporate Governance, Strategic Management, Business Environment, Business Policy and Community Welfare, aims to identify the community engagement model of THDCL; analyse it in terms of its implementation and impact; and initiate discussion about the role of strategic partnerships under Corporate Social Responsibility in an emerging economy. This work may be used for developmental related workshops/training programmes for students and working professionals of innovation, CSR, sustainability, social and developmental sectors and shared, among others, in various Chambers of Commerce and Academic forums on the same. It is, however, not intended to serve as an endorsement, source of data or illustration of effective or ineffective management. Certain names and information could have been disguised for confidentiality. (shrink)

Background:Nurses exposed to community health nursing commonly encounter situations that can be morally distressing. However, most research on moral distress has focused on acute care settings and very little research has explored moral distress in a community health nursing setting especially among nursing students.Aim:To explore the moral distress experiences encountered by undergraduate baccalaureate nursing students in community health nursing.Research design:A descriptive qualitative design was employed to explore the community health nursing experiences of the nursing students that (...) led them to have moral distress.Participants and research context:The study included 14 senior nursing students who had their course in Community Health Nursing in their sophomore year and stayed in the partner communities in their junior year for 6 and 3 weeks during their senior year.Ethical considerations:Institutional review board approval was sought prior to the conduct of the study. Self-determination was assured and anonymity and confidentiality were guaranteed to all participants.Findings:Nursing students are vulnerable and likely to experience moral distress when faced with ethical dilemmas. They encounter numerous situations which make them question their own values and ideals and those of that around them. Findings of the study surfaced three central themes which included moral distress emanating from the unprofessional behavior of some healthcare workers, the resulting sense of powerlessness, and the differing values and mindsets of the people they serve in the community.Conclusion:This study provides educators a glimpse of the morally distressing situations that often occurs in the community setting. It suggests the importance of raising awareness and understanding of these situations to assist nursing students to prepare themselves to the “real world,” where the ideals they have will be constantly challenged and tested. (shrink)

“Privacy as confidentiality” has been the dominant paradigm in computer science privacy research. Privacy Enhancing Technologies (PETs) that guarantee confidentiality of personal data or anonymous communication have resulted from such research. The objective of this paper is to show that such PETs are indispensable but are short of being the privacy solutions they sometimes claim to be given current day circumstances. Using perspectives from surveillance studies we will argue that the computer scientists’ conception of privacy through data or (...) communication confidentiality is techno-centric and displaces end-user perspectives and needs in surveillance societies. We will further show that the perspectives from surveillance studies also demand a critical review for their human-centric conception of information systems. Last, we rethink the position of PETs in a surveillance society and argue for the necessity of multiple paradigms for addressing privacy concerns in information systems design. (shrink)

The success or failure of an ineffective assistance of counsel claim turns largely on the testimony of trial counsel. It is therefore common for the government to communicate ex parte with trial co...

Community-based participatory research is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with HIV and addictions issues. The structure (...) of hospital-based care delivery required the team to account for participants’ health-related limitations, including adopting recruitment strategies built on clinical care, and modifying the original research design to better protect participant confidentiality in a small space. Although CBPR offers an important strategy for researching with members of hospitalized communities, it requires research teams to develop context-relevant approaches to ethically engaging community members that recognize the ways clinical space mediates the research process. (shrink)

Background Despite news reports of morally distressing situations resulting from complex and demanding community-care delivery in Canada, there has been little research on the topic of ethical conflicts experienced by community-based health care professionals. Research aim To identify ethical conflicts experienced by community nurses. Research design Data were collected using semi-structured interviews and then relevant text was extracted and condensed using qualitative content analysis. This research was part of a larger grounded theory project examining how community (...) nurses manage ethical conflict. Research context and participants Community nurses, including 13 public health nurses and 11 home care nurses from two Canadian provinces, were interviewed. Ethical considerations Study approval was granted by the Health Research Ethics Authority of Newfoundland and Labrador and by provincial health authorities. Findings Seven ethical conflicts were identified and assigned to one of two groups. In the grouping categorized as challenges with obligations or risks, the ethical conflicts were: (1) screening for child developmental issues knowing there is a lack of timely early intervention services; (2) encountering inequities in the health care system; (3) not fulfilling principles, goals, and initiatives of primary and secondary prevention; and (4) feeling powerless to advocate for clients. The remaining ethical conflicts were categorized as challenges with process, risks, and consequences, and were: (5) jeopardizing therapeutic relationships while reporting signs of a child at risk; (6) managing confidentiality when neighbors are clients; and (7) supporting client autonomy and decision-making but uncertain of the consequences. Conclusions Research investigation will continue to be important to raise awareness and mobilize ethics supports as health care services are steadily shifted from institutional to community settings. Moreover, with heightened potential for communicable disease outbreaks across international borders from global warming, community nurses around the world will continue to be required to address ethically-difficult care situations with competence and compassion. (shrink)

Advances in genetic technologies raise a multitude of ethical issues, some of which give rise to novel dilemmas for medical practice. One of the most controversial problems arising in clinical genetics is that of confidentiality and who may disclose genetic health information. This paper considers the question of when it is appropriate for health professionals to disclose clinically significant genetic information without patient consent. Existing ethical principles offer little guidance in relation to this issue. We build on suggestions that (...) genetic information may be viewed as collective or shared information, and we introduce the concept of ‘familial comity’ as a fresh way to consider the issues. (shrink)

Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living with long-term conditions. (...) A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom -based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to. (shrink)

Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on (...) who has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family. (shrink)