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)

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)

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.

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)

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)

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

Within psychiatry, patients, family, and professionals are involved and interrelated. Yet it is not easy for healthcare professionals to involve family actively in patient care. Taking a feminist perspective, we investigate why health-care professionals experience ambivalence in involving family in attempts to reduce seclusion, suggesting how they can improve family involvement by adopting a relational view on autonomy. Professionals should view patients not only in terms of individual autonomy and rights, but also in terms of relations and dependencies that need (...) to be considered in fostering patient care. (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 (...) class='Hi'>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)

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)

Health research raises profound concerns of an ethical and legal nature — concerns primarily centered on how to balance researchers’ quest for scientific discovery against societal interest in protecting individuals whose participation makes the discovery possible. Particularly in a country such as Nigeria, which, not too long ago, suffered major abuse of research subjects, deploying a robust ethicolegal regime capable of curbing excesses and protecting research participants whilst contemporaneously not frustrating scientific progress is not an easy task. This is even (...) more critical in the context of novel scientific endeavors, such as biobanking and genomic research, particularly when a significant pool of potential donors are inadequately informed about the processes involved in their participation or the result. (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 Human Genome Project has raised many issues regarding the contributions of genetics to a variety of diseases and societal conditions. With genetic testing now easily conducted with lowered costs in nonmedical domains, a variety of privacy issues must be considered. Such testing will result in the loss of significant privacy rights for the individual. Society must now consider such issues as the ownership of genetic data, confidentiality rights to such information, limits placed on genetic screening, and (...) legislation to control genetic testing and its applications. There is often a conflict between individual rights to privacy and the need for societal protection. (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)

Background: For patients admitted to hospital both pastoral care and privacy or confidentiality are important. Rules related to each have come into conflict recently in the US. Federal laws and other rules protect confidentiality in ways that countermand hospitals’ methods for facilitating access to pastoral care. This leads to conflicts and poses an unusual type of dilemma—one of conflicting values and rights. As interests are elements necessary for establishing rights, it is important to explore patients’ interests in (...) privacy compared with their desire for attention from a cleric.Aim: To assess the willingness of patients to have their names and rooms included on a list by religion, having that information given to clergy without their consent, their sense of privacy violation if that were done and their views about patients’ privacy rights.Methods and participants: 179 patients, aged 18–92 years, admitted to hospital in an acute care setting, were interviewed and asked about their preferences for confidentiality and pastoral support.Results: Most patients did not want to be listed by religion; 58% did not think hospitals should give lists to clergy without their consent and 84% welcomed a visit by their own clergy even if triggered from a hospital list.Conclusions: Values related to confidentiality or privacy and pastoral care were found to be inconsistent and more complicated than expected. Balancing the right to privacy and the value of religious support continue to present a challenge for hospitals. Patients’ preferences support the importance of providing balance in a way that protects rights while offering comprehensive services. (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)

Approximately 1 in 30 people develop cancer due to an underlying familial predisposition. Genetic counselling and testing for people with (and at risk of) familial cancer are becoming more widely available, but service providers need to address challenging issues in relation to privacy and property. As in any counselling situation, a genetic counsellor seeks to ensure that the principles of autonomy, confidentiality, beneficence, and equity operate in favour of the client. But in dealing with a familial disorder, the (...) application of these principles to the individual must be balanced with the potential for these principles to apply to other family members. This paper summarises the recent experience of a familial cancer service in seeking to avoid situations in which these principles, operating for both individual clients and their relatives, can come into conflict. (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)

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)

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.

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)

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including (...) demographics, clinical experience and use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

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)

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)

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

“Jane” is a mother of two, who was referred for psychotherapy. However, Jane had misgivings about engaging in the offered psychotherapy because of threats made by her domestically violent partner. The therapy sessions are audio recorded for the purpose of professional supervision and clinician reflective practices. Jane’s partner had threatened to subpoena the therapy recordings to legally separate Jane from her children. This article focuses on how three different parts of Jane’s multidisciplinary care exhibit different competing ethical priorities. Psychotherapeutic clinicians (...) private use of audio recordings of the therapy enhances patient care and their own professional development but with the risk of concealing possible unethical behaviour by either party. Medico-legal access to the therapy recordings preserves potentially relevant evidence in the pursuit of justice but risks the interpretation of the psychotherapeutic information outside of the therapeutic context. Policies advocating the inclusion of the therapy recordings in the medical record improves clinician accountability but risks harming the vulnerable patient due to threats to patient-therapist confidentiality. (shrink)

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

The fields of HIV care in pregnancy and reproductive genetics have always been ‘exceptional’ in that patients are highly concerned about the potential for stigma and the corresponding need for privacy and confidentiality. However, the two fields have diverged in how they have addressed these concerns. The systematic review analyzed 61 manuscripts for similarities and differences between the fields of HIV care in pregnancy and reproductive genetics in the United States, with respect to privacy, confidentiality, disclosure, (...) and stigma. The systematic review revealed that the field of HIV care in pregnancy has insufficiently addressed patient concerns about privacy, confidentiality, and stigma compared to the field of reproductive genetics. Failure to adequately protect confidentiality of HIV-positive patients, and failure to reduce stigma associated with HIV testing and treatment are deficiencies in the delivery of care to HIV-positive pregnant woman and barriers to reducing vertical transmission of HIV. Im.. (shrink)

Abstract:Electronic health records (EHRs) offer significant advantages over paper charts, such as ease of portability, facilitated communication, and a decreased risk of medical errors; however, important ethical concerns related to patient confidentiality remain. Although legal protections have been implemented, in practice, EHRs may be still prone to breaches that threaten patient privacy. Potential safeguards are essential, and have been implemented especially in sensitive areas such as mental illness, substance abuse, and sexual health. Features of one institutional model are (...) described that may illustrate the efforts to both ensure adequate transparency and ensure patient confidentiality. Trust and the therapeutic alliance are critical to the provider–patient relationship and quality healthcare services. All of the benefits of an EHR are only possible if patients retain confidence in the security and accuracy of their medical records. (shrink)

Background: The developments in technology and communication channels, increasing workload, and carelessness cause problems regarding patient privacy and confidentiality in nursing services. Research objectives: The study was conducted to develop a patient privacy scale to identify whether nurses observe or violate patient privacy at workplace. Research design: This research was a methodological and descriptive study. Participants and research context: Participants were 354 nurses working at private hospitals and hospitals affiliated with the Ministry of Health in Istanbul/Turkey. (...) Data were collected with a questionnaire about the demographic characteristics of nurses and their opinions about patient privacy and with patient privacy scale. Ethical considerations: After getting permission from the top management of hospitals, information about the study was given to nurses. Those willing to participate were informed that participation was voluntary and invited to give written consent before data collection. Findings: The content validity index of scale was 0.91, Cronbach’s alpha was 0.93, Spearman–Brown and Guttman coefficients were 0.85, the upper and lower 27% test was −29.65, and item-total correlation values ranged from 0.47 to 0.71. The scale had five subscales. In addition, 49% of the nurses stated that patient privacy was always observed in their services/units. They appraised with a mean score of 4.51 ± 0.49 for the total scale, 4.39 ± 0.61 for confidentiality of personal information and private life, 4.39 ± 0.70 for sexual privacy, 4.56 ± 0.57 for the privacy of those unable to protect themselves, 4.60 ± 0.59 for physical privacy, and 4.60 ± 0.52 for ensuring a favorable environment. Discussion: The findings of this study were in contrast with the results of some international studies which determined the violation of the patient privacy. Conclusion: The patient privacy scale is a valid and reliable tool to collect data on whether nurses observe or violate patient privacy, and the nurses generally reported observing or paying attention to patient privacy in all hospitals and especially private hospitals. (shrink)

Background: Nurses providing 24-h care for the primary caregiver role have a number of significant roles to play in potential problems or conflicts associated with patient privacy and confidentiality. Research objectives: The objective of the study is to determine the prevailing attitudes towards gossip and the patient privacy practices of nurses working in paediatric units. Research design: A descriptive and cross-sectional design was used. A Descriptive Characteristics Form, a Gossip and Rumour Attitude Scale and a Patient (...) class='Hi'>Privacy Scale were used to collect data. Participants and research context: A total of 112 paediatric nurses working in Turkey were included in the study. The response rate was 79.43%. Ethical considerations: Permission to conduct the study was obtained from the university’s ethics committee. The participants were informed of the aim of the study, and voluntary participation, anonymous response and confidentiality were explained to them. Findings: It was observed that nurses who had a higher education level, who were educated about patient privacy and who had read the patient rights regulations were more concerned about patient privacy. Negative correlations were found between the attitudes towards gossiping and the average scores on the patient confidentiality scale. Nurses who negatively defined gossip were more concerned about patient confidentiality. Discussion: Privacy is important for securing and protecting the personal, physical and psychological things that are important and special for patients. It is argued that obstacles to maintaining the privacy of hospitalized children and adolescents are a tolerant attitude towards gossiping, a lack of education about patient privacy and insufficient information about patient’s rights regulations and the Convention on the Rights of the Child. Conclusion: A nurse’s knowledge about the provision of patient confidentiality affects their privacy practices. For this reason, regular training sessions are recommended in hospitals. (shrink)

The obligation to maintain the privacy of patients and research participants is foundational to biomedical research. But there is growing concern about the challenges of keeping participant information private and confidential. A number of recent studies have highlighted how emerging computational strategies can be used to identify or reidentify individuals in health data repositories managed by public or private institutions. Some commentators have suggested the entire concept of privacy and anonymity is “dead”, and this raises legal and ethical (...) questions about the consent process and safeguards relating to health privacy. Members of the public and research participants value privacy highly, and inability to ensure it could affect participation. Canadian common law and legislation require a full and comprehensive disclosure of risks during informed consent, including anything a reasonable person in the participant or patient’s position would want to know. Research ethics policies require similar disclosures, as well as full descriptions of privacy related risks and mitigation strategies at the time of consent. In addition, the right to withdraw from research gives rise to a need for ongoing consent, and material information about changes in privacy risk must be disclosed. Given the research ethics concept of “non-identifiability” is increasingly questionable, policies based around it may be rendered untenable. Indeed, the potential inability to ensure anonymity could have significant ramifications for the research enterprise. (shrink)

The issue of large-scale, population based DNA collections has become a world-wide discussion, which is hoped to bring substantial improvements in medicine. Continuous access to clinical data linked to the genetic samples is very important for some research that aims to find significant association between genes and diseases. This raises ethical issues related to privacy and confidentiality of medical records and the genetic information of the individuals who may be involved in the research. Genetic databases can also raise (...) challenges for the protection of the rights of the social groups, in avoiding potential stigmatization or discrimination. Informed consent of voluntary participants is another important issue in genetic research.We consider whether a person has ethical duties to donate a sample to a database if it will be used for the improvement of the health services to which they have benefited from. The balance between individual's privacy and public health is needed in genetic research. A good database will contribute to the good of both donors and society. (shrink)

Emerging child welfare policies promoting preventive and early intervention services present a challenge to professional ethics, raising questions about how to balance respect for service users with concern for social justice. This article explains how the UK policy involves shifting the balance of power away from families towards state and professional decision making. The policy is predicated on sharing information between professionals to inform risk and need assessment and so poses a problem for the ethic of confidentiality in a (...) helping relationship. This article examines the arguments for information sharing and questions whether the predicted benefits for children outweigh the cost of eroding family privacy and changing the nature of professional relationships with service users. (shrink)

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the (...) Human Genome Project. The central goals of the GPA are twofold: to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons. (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)