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)

Christopher Belshaw responds to Paul Wainwright’s Comment "'Undercover nurse' struck off the professional register for misconduct".

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)

Professor Vuori's paper, first presented at the fourth Medico-legal Conference in Prague in the spring of this year, deals with the problem of the maintenance of confidentiality in computerized health records. Although more and more information is required, the hardware of the computer systems is so sophisticated that it would be very expensive indeed to 'break in' and steal from a modern data bank. Those concerned with programming computers are becoming more aware of their responsibilities concerning confidentiality and (...) privacy, to the extent that a legal code of ethics for programmers is being formulated. They are also aware that the most sensitive of all relationships--the doctor-patient relationship--could be in danger if they failed to maintain high standards of integrity. An area of danger is where administrative boundaries between systems must be crossed--say between those of health and employment. Protection of privacy must be ensured by releasing full information about the type of data being stored, and by maintaining democratic control over the establishment of information systems. (shrink)

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)

“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)

Next SectionThe precise nature and scope of healthcare confidentiality has long been the subject of debate. While the obligation of confidentiality is integral to professional ethical codes and is also safeguarded under English law through the equitable remedy of breach of confidence, underpinned by the right to privacy enshrined in Article 8 of the Human Rights Act 1998, it has never been regarded as absolute. But when can and should personal information be made available for statistical and research (...) purposes and what if the information in question is highly sensitive information, such as that relating to the termination of pregnancy after 24 weeks? This article explores the case of In the Matter of an Appeal to the Information Tribunal under section 57 of the Freedom of Information Act 2000, concerning the decision of the Department of Health to withhold some statistical data from the publication of its annual abortion statistics. The specific data being withheld concerned the termination for serious fetal handicap under section 1(1)d of the Abortion Act 1967. The paper explores the implications of this case, which relate both to the nature and scope of personal privacy. It suggests that lessons can be drawn from this case about public interest and use of statistical information and also about general policy issues concerning the legal regulation of confidentiality and privacy in the future. (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)

While it is acknowledged that there is a need for more qualitative research on suicide, it is also clear that the ethics of undertaking such research need to be addressed. This article uses the case study of the authors’ experience of gaining ethics approval for a research project that asks people what it is like to feel suicidal to (a) analyse the limits of confidentiality and anonymity and (b) consider the ways in which the process of ethics review (...) can shape and constrain suicide research. This leads to a discussion of the ways in which ethics committees assess and monitor qualitative research more generally and some preliminary suggestions for how this might be improved. (shrink)

Ethical dilemmas are often not discussed in the dissemination of educational research. While the ethical guidelines for research seem clear at first glance, a closer look at the intimate nature of qualitative research reveals that there are many ambiguities or ‘grey’ areas where researchers must rely on their personal value systems. This article discusses the challenges faced by an experienced educator, although novice researcher, in considering the ethical parameters of her own research with adolescents with hearing loss. In particular, the (...) grey ethical areas identified by the researcher include: (a) vulnerable population; (b) researcher role confusion; (c) consent; (d) privacy, confidentiality, and anonymity; as well as (e) the nature of risk. Based on the author’s own reflections on beginning the research process, the article presents possible pitfalls and ways of overcoming the possibility of becoming immobilized by the ethical enigmas of research. (shrink)

Advances in science and technology frequently raise new ethical, legal, and social issues, and developments in neuroscience and neuroimaging technology are no exception. Within the field of neuroethics, leading scientists, ethicists, and humanists are exploring the implications of efforts to image, study, treat, and enhance the human brain.This article focuses on one aspect of neuroethics: the confidentiality and privacy implications of advances in functional magnetic resonance imaging. Following a brief orientation to fMRI and an overview of some of its (...) current and proposed uses, this article highlights key confidentiality and privacy issues raised by fMRI in the contexts of health care, research, employment, insurance, criminal justice, litigation, and cognitive privacy. (shrink)

Advances in science and technology frequently raise new ethical, legal, and social issues, and developments in neuroscience and neuroimaging technology are no exception. Within the field of neuroethics, leading scientists, ethicists, and humanists are exploring the implications of efforts to image, study, treat, and enhance the human brain.This article focuses on one aspect of neuroethics: the confidentiality and privacy implications of advances in functional magnetic resonance imaging. Following a brief orientation to fMRI and an overview of some of its (...) current and proposed uses, this article highlights key confidentiality and privacy issues raised by fMRI in the contexts of health care, research, employment, insurance, criminal justice, litigation, and cognitive privacy. (shrink)

“On Privacy” introduces philosophical arguments bearing on contemporary debates about privacy protection. The book, written for a non-academic audience, focuses on the value of privacy. Lever’s approach is refreshing. First, she sidesteps the controversies over defining privacy, settling for concepts generally associated with privacy: seclusion and solitude, anonymity and confidentiality, intimacy and domesticity. Second, Lever moves beyond the traditional arguments that value privacy because it protects the interests of individuals: what is at stake in protecting privacy is not (...) only individual interests but the democratic nature of modern societies. Whilst the link between privacy and democracy is not novel, it has not been substantiated in the literature; in filling this gap, Lever’s book is of interest to both general readers as well as privacy scholars.The Introduction looks at the most influential accounts of the value of privacy and proposes a minimal definition of democracy in t .. (shrink)

Even though health care provider reporting of diseases to public health authorities is common, often there is under-reporting by providers, including for notifiable diseases; frequently, under-reporting occurs by wide margins. Two causal factors for this under-reporting by providers have been that: disclosing data may violate their patients’ privacy, and disclosed data may be used to evaluate their performance. A reluctance to disclose information due to privacy concerns exists despite the U.S. Health Insurance Portability and Accountability Act Privacy Rule permitting disclosures (...) of personal health information for public health purposes without patient authorization. On the other hand, such patient privacy concerns are somewhat justified: there have been documented breaches of patient information from public health data custodians.A common way to address this privacy issue is to de-identify patient data before it is disclosed to public health. (shrink)

So-called ‘anonymous’ tissue samples are widely used in research. Because they lack externally identifying information, they are viewed as useful in reconciling conflicts between the control, privacy and confidentiality interests of those from whom the samples originated and the public (or commercial) interest in carrying out research, as reflected in ‘consent or anonymise’ policies. High level guidance documents suggest that withdrawal of consent and samples and the provision of feedback are impossible in the case of anonymous samples. In view (...) of recent developments in science and consumer-driven genomics the authors argue that such statements are misleading and only muddle complex ethical questions about possible entitlements to control over samples. The authors therefore propose that terms such as ‘anonymised’, ‘anonymous’ or ‘non-identifiable’ be removed entirely from documents describing research samples, especially from those aimed at the public. This is necessary as a matter of conceptual clarity and because failure to do so may jeopardise public trust in the governance of large scale databases. As there is wide variation in the taxonomy for tissue samples and no uniform national or international standards, the authors propose that a numeral-based universal coding system be implemented that focuses on specifying incremental levels of identifiability, rather than use terms that imply that the reidentification of research samples and associated actions are categorically impossible. (shrink)

This doctoral thesis consists of five research papers that address four tangential topics, all of which are relevant for the challenges we are facing in our socio-technical society: information, security, privacy, and anonymity. All topics are approached by similar methods, i.e. with a concern about conceptual and definitional issues. In Paper I—concerning the concept of information and a semantic conception thereof—it is argued that the veridicality thesis is false. In Paper II—concerning information security—it is argued that the current leading (...) definitions suffer from counter-examples, and lack an appropriate conceptual sense. Based on this criticism a new kind of definition is proposed and defended. In Paper III—concerning control definitions of privacy—it is argued that any sensible control-definition of privacy must properly recognize the context as part of the defining criteria. In Paper IV—concerning the concept of privacy—it is argued that privacy is a normative concept and that it is constituted by our social relations. Final, in Paper V—concerning anonymity—it is argued that the threat from deanonymization technology goes beyond harm to anonymity. It is argued that a person who never is deanonymized can still be harmed and what is at stake is an ability to be anonymous. (shrink)

As the General Medical Council (GMC) is currently in the process of reviewing its ethical guidance on confidentiality, it is a prescient time to consider the legal and ethical issues inherent in it. This paper examines the question of anonymized data, and highlights the fact that the legal position regarding whether it should be classed as confidential is unclear, with the possibility of a change in the law being very real. Indeed, the article argues that the notion that anonymized (...) data is not confidential can be challenged on both legal and ethical grounds, and thus that the GMC should take this into account in its new guidance. Although identifying the fact that this might have implications for epidemiological research, the article highlights an alternative approach that would allow the conduct of such research while not infringing patients' legally protected human rights. (shrink)

Drawing on the views of donors and recipients about anonymity in a country that is experiencing a transition towards non-anonymous gamete donation mandated by the Constitutional Court, we explore how the intersection between rights-based approaches and an empirical framework enhances recommendations for ethical policy and healthcare. Between July 2017 and April 2018, 69 donors and 147 recipients, recruited at the Portuguese Public Bank of Gametes, participated in this cross-sectional study. Position towards anonymity was assessed through an open-ended question (...) in a self-report questionnaire, which was subject to content analysis. Preference for an anonymous donation regime was mentioned by 82.6% of donors and 89.8% of recipients; and all those with children. Instead of the rights-based reasoning used by the Constitutional Court, donors highlighted concerns over future relationships and recipients focused on socioethical values linked with the safeguard of safety, privacy and confidentiality. The remaining participants advocated the choice between anonymity or non-anonymity, invoking respect for their autonomy. The complex, diverse ethical views and reasoning of donors and recipients expand a traditionally dichotomous discussion. Their perspectives challenge the transition towards non-anonymity and international guidelines, raising awareness to the need for their involvement in the design of policies to enable choice according to their values and preferences, and of psychosocial counselling responsive to their socioethical concerns and sensitive to their parental status. Empirical frameworks complement rights-based approaches to uphold justice, fairness and equal respect, and to incorporate utility, beneficence and non-maleficence in policymaking and healthcare in the transition towards non-anonymity. (shrink)

Background: Nurses and midwives have a professional obligation to promote health and prevent disease, and therefore they have an essential role to play in vaccination. Despite this, some nurses and midwives have been found to take an anti-vaccination stance and promulgate misinformation about vaccines, often using Facebook as a platform to do so. Research question: This article reports on one component and dataset from a larger study – ‘the positives, perils and pitfalls of Facebook for nurses’. It explores the specific (...) issue of nurses and midwives who take an anti-vaccination stance, deemed to be unprofessional by crossing professional boundaries and by providing medical information on Facebook that is not within their scope of practice. Participants: Data were collected via an online worldwide survey from nurse and midwife participants, distributed and ‘snowballed’ through relevant nursing and midwifery groups on Facebook. In total, 1644 Registered Nurses and Midwives, and Enrolled Nurses worldwide attempted the online survey. There were 1100 completed surveys and 54 partially completed surveys. Semi-structured interviews were also conducted online using Skype® with 17 participants in Australia. Ethical considerations: Ethical processes and procedures have been adhered to relating to privacy, confidentiality and anonymity of the participants. Findings/results: A mixed-methods approach was used, including descriptive and content analysis of the quantitative survey data and thematic analysis of the qualitative interview data. The main theme ‘blurred boundaries’ was generated, which comprised three sub-themes: ‘follow the science, ‘abuse of power and erosion of trust’ and ‘the moral and ethical responsibility to safeguard public health’. The results offer an important and unique understanding of how nurses and midwives interpret the conduct of fellow health professionals as unprofessional and crossing the professional boundary if they used Facebook to promulgate anti-vaccination messages and/or give medical advice online. Conclusion: There are many positives and negatives for nurses and midwives associated with using Facebook for personal and professional communication, which is in keeping with the results of the larger study from which this article is taken. Professional behaviour is a key theme in the larger research as is the ethical construct of ‘every act has a consequence’; however, in this article, the theme ‘blurred boundaries’ offers an overall understanding of how nurses and midwives interpret the behaviour of their colleagues who espouse anti-vaccination sentiment and/or give medical advice online that is outside their scope of practice and education. (shrink)

The issue of genetic inheritance, and particularly the contradictory rights of donors, recipients and donor offspring as to the disclosure of donor identities, is ethically complicated. Donors, donor offspring and parents of donor offspring may appeal to individual rights for confidentiality or disclosure within legal systems based on liberal rights discourse. This paper explores the ethical issues of non-disclosure of genetic inheritance by contrasting two principle models used to articulate the problem—liberal and communitarian ethical models. It argues that whilst (...) the latter provides a more constructive avenue to providing an ethics for donation than the competing and contradictory positions represented in a liberal rights approach, it raises issues of ethical judgement and authority that remain problematic. This ethical discussion is supported by a field study, funded by the Wellcome Trust, exploring the perceptions and experiences of recipients of donor sperm and their partners towards donor anonymity. The field study provides the empirical basis of an argument for making ethical judgements on the grounds of the community good rather than individual rights, that nevertheless recognises that both are inherently problematic. (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.

Background: Medical confidentiality underpins the doctor–patient relationship and ensures privacy so that intimate information can be exchanged to improve, preserve, and protect the health of the patient. The right to information applies to the patient alone, and, only if expressly desired, can it be extended to family members. However, it must be remembered that one of the primary tenets of family medicine is precisely that patient care occurs ideally within the context of the family. There may be, then, certain (...) occasions when difficulties will arise as to the extent of the information provided to family members.Objectives: This study aimed to describe family doctors’ attitudes to confidentiality and providing patient information to relatives as well as their justifications for sharing information.Method: A descriptive postal questionnaire was self-administered by family doctors.Results: Of 227 doctors, 95.1% provided information to a patient’s family and over a third disclosed information to others without prior patient consent.Conclusions: The findings reveal that family doctors should pay more attention to their patients’ rights to information, privacy, and confidentiality, and reflect very carefully on the fine balance between this and the occasional need for the support and collaboration of family members in delivery of care. Emphasis should be placed on ethics and legal problems during undergraduate education and in-service training of doctors. (shrink)

This is a direct challenge to the notion of library neutrality, especially in the present context of war, revolution, and social change. This book locates library and information workers as participants and interventionists in social conflicts. The strategies for social action worldwide were chosen because of their connection to elements of the Universal Declaration of Human Rights (1948) that relate particularly to core library values, information ethics, and global information justice. This book also encourages readers to pay attention to links (...) between library and information work and the following solidarity rights not currently incorporated into any legally-binding human rights framework. The aim is primarily at librarians, archivists, educators and students. Content consists of essential concepts presented in accessible terms (e.g., critical librarianship, information ethics, global information justice, human rights), along with a practical orientation to action on contemporary issues (e.g., intellectual freedom, intellectual property, preservation, cultural destruction, censorship, public access to government information, commercialization, academic freedom, workplace speech, international relations, anonymity, privacy, confidentiality, human security, national security policies, transborder data flow, and information poverty). (shrink)

In recent years there has been concern among law enforcement and national security organizations about the use of “anonymous” prepaid mobile phone service and its purported role in supporting criminal and terrorist activities. As a result, a number of countries have implemented registration requirements for such service. Privacy rights advocates oppose such regulatory measures, arguing that there is little practical value in attempting to register prepaid mobile devices, and the issue raises important questions about a citizen's entitlement to anonymity (...) in the ownership of a networked communications device. This article provides an overview of the issue and presents findings drawn from a recent study on prepaid mobile phone regulation in the Organisation for Economic Co-operation and Development countries. The article concludes by suggesting that there are significant problems with the claim that mandatory registration of prepaid mobile phone service is a necessary or an effective regulatory course of action. (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.

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.

Genetic privacy and confidentiality have both intrinsic and consequential value. Although general agreement exists about the need to protect privacy and confidentiality in the abstract, most of the concern has focused on preventing the harmful uses of this sensitive information. I hope to demonstrate in this article that the reason why genetic privacy and confidentiality are so difficult to protect is that any effort to protect them inevitably implicates broader and extremely contentious issues, such as the right (...) of access to health care. Moreover, the tentative legislative and policy steps undertaken and proposed thus far have been, for the most part, misguided, simplistic, and ineffective. (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)

Genetic privacy and confidentiality have both intrinsic and consequential value. Although general agreement exists about the need to protect privacy and confidentiality in the abstract, most of the concern has focused on preventing the harmful uses of this sensitive information. I hope to demonstrate in this article that the reason why genetic privacy and confidentiality are so difficult to protect is that any effort to protect them inevitably implicates broader and extremely contentious issues, such as the right (...) of access to health care. Moreover, the tentative legislative and policy steps undertaken and proposed thus far have been, for the most part, misguided, simplistic, and ineffective. (shrink)

As we move our social institutions from paper and ink based operations to the electronic medium, we invisibly create a type of surveillance society, a panopticon society. It is not the traditional surveillance society in which government officials follow citizens around because they are concerned about threats to the political order. Instead it is piecemeal surveillance by public and private organizations. Piecemeal though it is, It creates the potential for the old kind of surveillance on an even grander scale. The (...) panopticon is the prison environment described by Foucault in which prison cells are arranged in a large circle with the side facing the inside of the circle open to view. The guard tower is placed in the middle of the circle so that guards can see everything that goes on in every cell. When we contemplate all the electronic data that is now gathered about each of us as we move through our everyday lives --- intelligent highway systems, consumer transactions, traffic patterns on the internet, medical records, financial records, and so on --- there seems little doubt that we are moving into a panopticon. The social issues that arise from this are too numerous to detail here, but data retention is an important part of it. In the paper-and-ink world, documents are filed, files are boxed, boxes are put away or thrown away. The capacity for data retrieval and manipulation is, thereby, limited by the sheer difficulty and cost of storing, finding, searching, and manipulating large numbers of paper files. This inconvenience functions as a mechanism whereby the system forgets past information, not unlike the way we ourselves forget. However, the story is very different in the digital world; digital information is easy to store, easy to search and manipulate, and inexpensive to keep over extensive periods of time. Digitalized information systems tend, therefore, to collect extensive ancillary information and to retain this information indefinitely. Such lack of forgetfulness is likely to hamper the ability of individuals to shed their past, and start over with a clean slate. Concerns about data retention were expressed in the early literature on the social impact of computing, but for the most part the issue has dropped from sight. Rarely, has the social good of discarding accumulated personal data been addressed. In this paper, we want to make the case by examining diverse cases in which retention of information by either business or governmental institutions hinders the ability of individuals to start over or to act autonomously. We hope our argument for the good of forgetfulness will challenge the standard framework in which such issues have traditionally been debated. The privacy debate exemplifies the traditional framework insofar as it has been characterized as involving an inherent tension between, on the one hand, the needs of organizations and institutions for more accurate and efficient information systems so as to further their goals and, on the other hand, the desire of individuals to have information about them kept private. Regan argues against this framing of the privacy issue in favor of one that recognizes the social importance of personal privacy. We will examine the non-forgetfulness of information systems as a problem threatening not just individual interests but social good as well. Cryptography is often cited as the technology that will give us privacy and mediate against surveillance. One of the uses of cryptography, encryption, will allow us, some hope, to create confidentiality and relationships of trust that will facilitate many of the social arrangements we now have and perhaps make them even more secure than they are now. Electronic cash, for example, could be created in such a form that it would have the anonymity associated now with hard cash Others are less optimistic of the potential for cryptography to re-create relationships of trust in the new medium. One important point that already seems clear is that even if encryption technology will protect the confidentiality and integrity of electronic transactions and data, it will NOT stop the observation of traffic patterns on networks. This seems an important distinction to put on the table. Our patterns of communication will continue to be available, no matter what is encrypted, and an amazing amount of information can be gleaned from this data. In a sense, it means content integrity but no anonymity. This will indubitably impact how we interact and with whom we interact. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to access to health data for research purposes. I (...) provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (shrink)

Health information by its nature is personal and sensitive. At the same time, significant public value has resulted from research with health records about determinants of health and effective provision of health services. In Canada, certain legislation and processes have been established to balance the individual's right to privacy and the public good associated with analysis of health information.My purpose is to describe privacy and confidentiality practices in Canada with respect to access to health data for research purposes. I (...) provide an overview of the Canadian health care system and the legislative framework used to regulate research related to health information and Canada's major national data bases. Then I describe the confidentiality and privacy policies and procedures of Statistics Canada, of the Canadian Institute for Health Information, and of health policy research organizations in three provinces. I conclude with comments on some current issues in health information in Canada. (shrink)

Various aspects of the concepts of privacy and confidentiality are discussed in relation to health care information in primary health care settings. In addition, findings are presented from patient and nurse practitioner focus groups held to elicit concerns that these two groups have in relation to privacy and confidentiality in their respective primary care settings. The focus groups were held prior to the implementation of the Health Insurance Portability and Accessibility Act in the USA. Implications for advanced practice (...) registered nurses in primary care practices are provided. (shrink)

anonymous tissue samples obtained in hospitals and clinics without donor consent. This can be justified as a response to a public health emergency, but should not be seen as setting a precedent for waiving consent whenever samples are anonymous. The following recommendations grow out of this discussion: (1) Studies using anonymous tissue samples should not be automatically exempt from consent requirements, and consent should not be waived simply to avoid anticipated refusals, low participation rates or self selection bias. (2) The (...) consensus on informed consent favors fulfilling as many of the elements of informed consent as reasonably possible, so studies should be assessed individually to determine if any or all elements of informed consent should be modified or omitted. (3) There is a need for greater regulation of the research use of tissue samples. (4) Investigators seeking approval to waive consent or modify elements of informed consent should document the sort of new findings that they believe would effect their calculations about the benefits and burdens to subjects who are enrolled in the study, and institutional review boards should indicate whether they agree with the investigators' analysis. Keywords: AIDS, Consent, Ethics, HIV, Notification, Privacy, Research, Screening, Surveillance CiteULike Connotea Del.icio.us What's this? (shrink)

Not many African countries have been able to develop a robust system for regulating health research within their respective jurisdictions, particularly in the realm of biobanking and genomics. This is not without reason. Aside from underdevelopment and all that it entails or perhaps in consequence thereof, countries in the region have been unable to make significant strides in medical research. But there are exceptions. Amongst the few seeming success stories is Uganda. Nonetheless, although the country has developed what appears to (...) be a functional framework to govern genomic research and biobanking, the consistency of key provisions with international standards, especially those pertaining to privacy of research participants and confidentiality of their health information, is not at all clear. Yet, making this determination – the main objective of this article – is critical in determining the adequacy of protection available to human research subjects in the country. (shrink)

Use of patient clinical photographs requires specific attention to confidentiality and privacy. Although there are policies and procedures for publishing clinical images, there is little systematic evidence about what patients and health professionals actually think about consent for publishing clinical images. We investigated the opinions of three stakeholder groups at 3 academic healthcare institutions and 37 private practices in Croatia. The questionnaire contained patient photographs with different levels of anonymization. All three respondent groups considered that more stringent forms of (...) permission for were needed identifiable photographs than for those with higher levels of anonymization. When the entire face was presented in a photo only 33% of patients considered that written permission was required, compared with 88% of the students and 89% of the doctors. Opinions about publishing patient photographs differed among the three respondent samples: almost half of the patients thought no permission was necessary compared with one-third of students and doctors. These results show poor awareness of Croatian patients regarding the importance of written informed consent as well as unsatisfactory knowledge of health professionals about policies on the publication of patients’ data in general. In conclusion, there is a need for increasing awareness of all stakeholders to achieve better protection of patient privacy rights in research and publication. (shrink)