The author, a regional health authority administrator, argues that `ownership' is a side issue in legal and moral arguments over confidentiality of medical records. Nor is it practicable, he argues, for doctors alone to control all access to the medical records. He proposes the principle of `custodianship' of confidential information, to be accepted by an institution as a whole, as a possible way of resolving the problem. In commentaries on this and the following article an academic lawyer and a (...) practising physician respond. (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 dissemination of information about patients through computers and multidisciplinary teams involves departures from traditional tenets of confidentiality. This raises ethical problems, exemplified by current practices in child health. In multidisciplinary teams, problems may arise because different professions utilise different types of data. Some team members may not appreciate the extent to which data may be unscientific and judgmental. Children and thier families may be labelled, without justification, preventing objective reappraisal. The ethical and legal implications are considered. Practice may (...) not conform to principles of natural justice, for example when care orders are sought. Obligations to the State may also imperil the confidentiality of the doctor-patient relationship, and of medical records, the legal status of which is confused and requires clarification. Allowing patients access to their records could be a useful safeguard, and the medical profession should devise alternatives should it not be accepted. (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)

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)

Although telephone consultations are widely used in the delivery of healthcare, they are vulnerable to breaches of patient confidentiality. Current guidelines on telephone consultations do not address adequately the issue of confidentiality. In this paper, we propose a solution to the problem: a password system to control access to patient information. Authorised persons will be offered the option of selecting a password which they will use to validate their request for information over the telephone. This simple yet stringent (...) method of access control should improve security while allowing the continuing evolution of telephone consultations. (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.

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, the American Society (...) for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)

Attention and disruptive behavior disorders present considerable challenges for children and their parents. These challenges have led to the development of parenting programs; however, there is a paucity of literature that discusses the ethical dilemmas parent training researchers face. This article reviews ethical principles and professional standards relevant to parent training research and provides case material to illustrate the challenge of balancing ethical adherence and empirical rigor using three ethical issues that commonly arise in parent training research. In particular, this (...) article focuses on ethical issues surrounding confidentiality in a group setting, use of control groups, and limiting changes in medication/treatment status outside of the treatment protocol. (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)

In Nazi Germany, approximately 200 000 mentally ill people were murdered under the guise of euthanasia. Relatively little is known regarding the fate of the Jewish mentally ill patients targeted in this process, long before the Holocaust officially began. For the Nazis, Jewish mentally ill patients were doubly cursed since they embodied both “precarious genes” and “racial toxin”. To preserve the memory of the victims, Yad Vashem, the leading institution dedicated to documentation of the Holocaust, actively collects information and documents (...) the fate of victims in an open online database. Recently, a list of approximately 1200 names of Jewish mentally ill euthanasia victims has been compiled from hospital archives. Their fate remains unknown to surviving family members. Given the duty to preserve medical confidentiality, can this list be publicised for public interest and for notifying families—publicising names and death circumstances, including where “killed” would immediately indicate that the person had had a mental illness? Does the right to medical confidentiality lapse upon death? Is time elapsed since death a factor? Can opposing obligations of preserving victims’ memory over-ride medical confidentiality? What if a family member objects to a grandparent’s name being exposed on the list of mentally ill patients? This article considers these issues as well as the “rational” and “non-rational” factors in ethical decisional making surrounding this unique dilemma. Several possible solutions are proposed including preserving the list in a locked database for access by families and researchers, publicising in the media that such a list exists, publishing the information online without any identifiers and submitting the information to historians, allowing them to process the data as they see fit. (shrink)

Data monitoring committees often are employed to review interim findings of randomised controlled trials. Interim findings are kept confidential until the data monitoring committee finds that they provide sufficiently compelling evidence regarding efficacy, typically because they have crossed the pre-defined statistical boundaries, or they raise serious concerns about safety. While this practice is vital to maintaining the scientific integrity of controlled trials and thereby ensuring their social value, it has been criticised as unethical. Commentators argue that withholding interim findings from (...) research participants is deceptive, inconsistent with valid informed consent, and a violation of respect for participants’ autonomy. The present article examines these arguments, focusing specifically on confidential data monitoring for efficacy. This practice need not be deceptive provided its use is disclosed to prospective research participants. In addition, confidential data monitoring does not make research participants worse off than they would be in the clinical setting and represents an acceptable limitation on the options available to prospective research participants. Taken together, these considerations suggest confidential data monitoring, subject to adequate safeguards, is ethically acceptable. (shrink)

Arguments are advanced, on a pragmatic basis, for preferring a 'situational' approach to medical ethical problems, rather than an approach based on any one of the dogmatic formulations on offer. The consequences of such a preference are exemplified in relation to confidentiality; and in relation to the ethical dilemmas which surround the beginning and the end of terrestrial human life.

Introduction: Variation across research ethics boards in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy.Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction.Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around a case study (...) with open-ended responses. Interviews were recorded, transcribed and coded manually.Results: Fourteen sites required individual patient consent for the study to proceed as proposed. Three indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites did not require consent. Two suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites required full committee review. Sixteen allowed an external research assistant to abstract information from the health record.Conclusions: Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions. (shrink)

Kenneth Kipnis (2006) presents a normative defense of strict confidentiality, but it follows from an empirical claim that allowing breach would result in all parties being worse off, including, par...

This paper discusses the results of a survey of medical and paramedical opinion relating to various difficult ethical issues in clinical genetics. These include the confidentiality of the doctor-patient relationship, prenatal diagnosis and termination, and Huntington's chorea. It is suggested that this method provides a useful means of assessing what is ethically acceptable in contemporary society.

Some would argue that the more promising areas of business ethics research are "sensitive." In such areas, it would be expected that subjects, if inclined to respond at all, would be guarded in their responses, or respond inaccurately. We provide an introduction to an empirical approach -- the unmatched block count (UCT) -- for collecting these potentially sensitive data which provides absolute anonymity and confidentiality to subjects and "legal immunity" to the researcher. Interestingly, under UCT protocol researchers could not (...) divulge subjects' responses even if they were inclined to do so. Beyond that, UCTs provide complete disclosure to subjects and there is no deception. (shrink)

For live-related kidney donation, the current UK guidance specifies that the donor has a right to know the recipient’s HIV status. This guidance may prevent some potential recipients from asking friends or family to donate, as they do not wish them to know they are HIV positive. Currently, it is felt necessary that the donor should know the HIV status of the recipient in order to give fully informed consent to the operation. However, the specific medical details are not required (...) in order to allow for donor informed consent. This consent requires knowledge of the general expectation for survival of a graft and the specific expectation for survival of this graft in the recipient; it does not require specific knowledge of the recipient’s medical condition. (shrink)

Background and methods: Psychiatric research can occasionally present particular ethical dilemmas, but it is not clear what kind of problems local research ethics committees actually experience in this field. We aimed to assess the type of problems that committees encounter with psychiatric research, using a postal survey of 211 LRECs.Results: One hundred and seven of those written to replied within the time limit. Twenty eight experienced few problems with psychiatric applications. Twenty six emphasised the value of a psychiatric expert on (...) the committee. The most common issues raised were informed consent and confidentiality . The use of placebos , the validity of psychiatric questionnaires and overuse of psychiatric “jargon” in psychiatric applications also raised concern.Conclusions: Our results suggest that LRECs have specific concerns regarding methodology, consent, and confidentiality in psychiatric research, and that they find psychiatric input invaluable. (shrink)

Wearable and mobile technology has advanced in leaps and bounds in the last decade with technological advances creating a role from enhancing healthy living to monitoring and treating disease. However, the discussion about the ethical use of such commercial technology in the community, especially in minors, is lacking behind. In this paper, we first summarize the major ethical concerns that arise from the usage of commercially available wearable technology in children, with a focus on smart watches, highlighting issues around the (...) consent process, mitigation of risk and potential confidentiality and privacy issues, as well as the potential for therapeutic misconceptions when used without medical advice. Then through a relevant thought experiment we move on to outline some further ethical concerns that are connected to the use of wearables by minors, to wit the issue of informed consent in the case of minors, forcing them to live in the spotlight, and compromising their right to an open future. We conclude with the view that mitigating potential pitfalls and enhancing the benefits of wearable technology especially for minors requires brave and comprehensive moral debates. (shrink)

It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical Data (...) Practices framework. The framework outlines six principles relevant to the collection and use of personal data—minimizing harm, fairly distributing benefits and burdens, respecting autonomy, transparency, accountability, and inclusion—and translates these principles into action-guiding practical imperatives for companies that process personal data. In addition to informing policy, the practical imperatives can be voluntarily adopted by companies to promote ethical data practices. (shrink)

The pursuit of genetic knowledge has such emotional, social, scientific, and financial importance that it has been compared to the divine quest for the Holy Grail, and to the calamity of opening Pandora's Box. Therefore, it comes as no surprise that the recent announcement of a completed blueprint for the human genome has fueled calls for both increased research and increased precautions. This new era, which holds the potential promise of advances in medicine, agriculture and other areas, also requires the (...) careful investigation of a myriad of issues. Those issues such as informed consent, patenting, privacy, and confidentiality, have been explored in at least some detail. Others, such as equity, mutual respect, empowering education, consensus building, and planning for long-term survival, have not been as fully examined, nor have they been as comprehensively integrated into mainstream thinking. To facilitate this, we need to implement an ethical approach that leads us to ask critical questions about the appropriate use of our new tools. (shrink)

Archival codes of ethics currently substitute lists of rules for moral guidance, possibly worsening a lack of societal respect for archives and archivists. This paper recommends the adoption of principal precepts to guide archivists in unfamiliar situations and to enhance the professionalization of archival enterprise. These principal precepts are confidentiality, dissociation, veracity, and "avoidance of the irreversible." Adoption of these precepts will move archival enterprise toward meriting the "Public Trust" and acceptance as a "trust profession.".

Much biomedical research cannot be performed without recruiting human subjects. Increasingly, volunteer registries are being developed to assist researchers with this challenging task. Yet, volunteer registries raise confidentiality issues. Having recently developed a registry of volunteers, the authors searched for normative guidance on how to implement the principle of confidentiality. The authors found that the protection of confidentiality in registries are based on the 10 key elements which are elaborated in detail in the Canadian Standards Association Model (...) Code. This paper describes how these 10 detailed key principles can be used during the developmental stages of volunteer registries. (shrink)

--Do patients have the right to know their physician's HIV status?-Can a dentist refuse treatment to an HIV-positive patient?-How do educators determine whether to allow an HIV-positive child to attend school, and if they do, should the parents of other children be informed?-Should a counselor break confidentiality by disclosing to a wife that her husband is infected with HIV?This collection of original essays carefully examines the difficult moral choices the AIDS pandemic has presented for many professionals-physicians, nurses, dentists, teachers (...) and school administrators, business managers, psychotherapists, lawyers, clergy, journalists, and politicians. In the workplace, problems posed by HIV and AIDS have led to a reexamination of traditional codes of ethics. Providing systematic and reasoned discussions, the authors explore the moral, legal, and ethical issues involved in the reconsideration of policies, standards of conduct, and the practicality of balancing personal and professional ethics. Author note: Elliot D. Cohen is Professor of Philosophy at Indian River Community College and Editor-in-Chief of the International Journal of Applied Philosophy.Michael Davis is Senior Research Associate at the Center for the Study of Ethics in Professions, Illinois Institute of Technology. (shrink)

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

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

State statutes, case law, and professional codes of ethics in the mental health professions typically stress either a duty or the permissibility of disclosing confidential information in order to prevent clients from seriously harming themselves. These sources are intended to address cases where clients are deemed to be suffering from cognitive dysfunction for which paternalistic intervention, including involuntary hospitalization, is considered necessary to prevent self-destructive behavior.The counselor’s moral and legal responsibility is less apparent when mentally competent clients desire suicide as (...) release from irremediable suffering due to severe physical illness, and this desire is defensible within these clients’ value systems. This paper will explore moral and legal dimensions of a counselor’s decision not to intervene in such cases. The concept of permitted suicide will be introduced and defined, and guidelines for its application developed. (shrink)

Encouraging students to apply classroom knowledge in their personal, everyday life is a major problem confronting many teachers of critical thinking. For example, while a student might recognize an ad hominem argument in a classroom exercise, it is quite another thing for him or her to avoid the same in interpersonal relations, say with parents, siblings, and peers. One approach to this problem is the creation of interaction software to which students can turn for input on the rationality of their (...) own thinking. Students can then speak to computers rather than instructors about their private lives without having to share confidential information with any other human being, yet still receive relevant feedback. I discuss software technology that actually performs this function. The software in question is an interactive, artificial intelligence program that checks beliefs for faulty thinking, including inductive and deductive errors. The system "scans" student essays for possible fallacies; asks questions at relevant junctions; provides individualized feedback on fallacies committed; provides summaries of fallacies found; diagnoses thinking problems; issues recommendations; and provides other pertinent information. (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)

This study discusses how perceptions of ethics are formed by certified public accountants (CPAs). Theologians are used as a point of comparison. When considering CPA ethical dilemmas, both subject groups in this research project viewed confidentiality and independence as more important than recipient of responsibility and seriousness of breach. Neither group, however, was insensitive to any of the factors presented for its consideration. CPA reactions to ethical dilemmas were governed primarily by provisions of the CPA ethics code; conformity to (...) that code may well be evidence of higher stage moral reasoning. (shrink)

BackgroundPediatricians in developing countries face different ethical dilemmas than do doctors working in settings with more resources. There are very few studies from developing countries analyzing pediatricians’ knowledge and attitudes regarding the ethical dilemmas that arise in such settings. To address this gap, we explored the clinical ethical knowledge, attitude and experience of physicians who are working in the Department of Pediatrics and Child Health of St Paul’s Hospital Millennium Medical College, Addis Ababa, Ethiopia.Study populationAll pediatric resident doctors and pediatric (...) consultants who were working in the DPCH of SPHMMC in December, 2020.MethodA structured pretested self-administered questionnaire was distributed to all 79 of the residents and consultants in the department during the period December 15–27, 2020. The questionnaire assessed the knowledge, attitude and experiences of the study participants regarding a variety of bioethical issues. Data were analyzed using SPSS version 20.0 for windows. The mean, median, standard deviation, and interquartile range of respondents’ scores were determined and compared using Fisher’s exact test.ResultA total of 59/79 physicians completed the questionnaire. The mean age of the participants was 30.7 ± 4.1 years. Thirty six were female. At the time of data collection, more than half served < 5 years as a physician. The mean ethics knowledge score of the respondents was 12.3 ± 2.34 out of 23 knowledge questions. The lowest and highest knowledge scores were 8 and 19 respectively. Scores were highest on questions about confidentiality and lowest on questions about genetic testing and diagnosis. Only 13 physicians agreed with the practice of children should never be treated without consent of the parent. ConclusionTertiary care pediatricians at one hospital in Ethiopia lack knowledge about current standards in bioethics. There is a need for more ethics education in this setting. (shrink)

There is consensus that children have questionable decisional capacity and, therefore, in general a parent or a guardian must give permission to enroll a child in a research study. Moreover, freedom from duress and coercion, the cardinal rule in research involving adults, is even more important for children. This principle is embodied prominently in the Nuremberg Code (1947) and is embodied in various federal human research protection regulations. In a program named "SATURN" (Student Athletic Testing Using Random Notification), each school (...) in the Oregon public-school system may implement a mandatory drug-testing program for high school student athletes. A prospective study to identify drug use among student-athletes, SATURN is designed both to evaluate the influence of random drug testing and to validate the survey data through identification of individuals who do not report drug use. The enrollment of students in the drug-testing study is a requirement for playing a school sport. In addition to the coercive nature of this study design, there were ethically questionable practices in recruitment, informed consent, and confidentiality. This article concerns the question of whether research can be conducted with high school students in conjunction with a mandatory drug-testing program, while adhering to prevailing ethical standards regarding human-subjects research and specifically the participation of children in research. (shrink)

This descriptive study is an attempt to characterize the field known as clinical ethics, with regard to the function of humanities scholars in the clinical setting, e.g., hospitals and ambulatory care clinics. It is not a strict epidemiological study but a qualitative survey, although it reports some empirical data. Most discussions of medical humanities in the literature are conceptual analyses of particular issues, such as informed consent, abortion, confidentiality, etc. Virtually no empirical studies with data on how many clinical (...) ethicists function in what roles and with what educational backgrounds have been reported. This is the first such study of humanities scholars in clinical ethics and will be followed by companion reports of physicians and hospital chaplains who are, by self-report, involved in clinical ethics. This report is an effort to stimulate and encourage dialogue and is in no way definitive. It is a preliminary study, and other needed studies are already underway. (shrink)

In 2011, the Department of Health and Human Services proposed changes to the regulations that govern human subjects protection in federally funded research. The proposed changes involve modifying inclusion standards for minimal-risk research and removing the necessity of review from certain categories of noninvasive research. All studies would instead be required to comply with privacy protections as initiated by the Health Information Portability and Accountability Act . We argue that relying on HIPAA to protect participants from participation-related risks in noninvasive (...) research is insufficient to protect the autonomy and psychological health of potential research participants. Instead, we suggest a streamlined review format for these categories of research. (shrink)

Very few researchers have reported on procedures of recruiting, obtaining informed consent, and compensating participants in health research in the Arabian Gulf Region. Empirical research can inform the debate about whether to adjust these procedures for culturally diverse settings. Our objective was to delineate procedures related to recruiting, obtaining informed consent, and compensating health research participants in the extremely high-density multicultural setting of Qatar.

ABSTRACT This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be (...) permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

ABSTRACT Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants who completed a survey approximately one month earlier. Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share data, concerns about privacy, (...) confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people’s perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information. (shrink)

Reality medical television, an increasingly popular genre, depicts private medical moments between patients and healthcare providers. Journalists aim to educate and inform the public, while the participants in their documentaries—providers and patients—seek to heal and be healed. When journalists and healthcare providers work together at the bedside, moral problems precipitate. During the summer of 2010, ABC aired a documentary, Boston Med, featuring several Boston hospitals. We examine the ethical issues that arise when journalism and medicine intersect. We provide a framework (...) for evaluating the potential benefits and harms of reality medical television, highlighting critical issues such as informed consent, confidentiality, and privacy. (shrink)

This bibliographical study involved first the exploitation of four data-banks: Medline, CNRS, Bioethics and AIDS, with the following key words (in conjunction with AIDS): ethics, human rights, confidentiality, legislation, jurisprudence. A total of 412 references were listed between 1983 and the end of 1987. Examination of the quantitative increase of articles over these years shows that, while references to AIDS and/or HIV infection--referred to as 'AIDS' for brevity--increased by about one third per year, the number of papers treating ethical (...) problems linked to AIDS doubled each year. This increase makes it clear that these problems are important and pressing, that they are evolving rapidly and can be given no easy solution. After reading and analysis of accessible articles in readily comprehensible languages, the different themes can be classified in two categories: 1: Measures intended to protect society (starting with the most coercive); quarantine and isolation; discriminatory measures concerning specific groups; non-respect of the confidential nature of medical information; application of the penal code; screening; obligatory declaration and registration; testing of blood given by donors; vaccination and medical innovations, therapeutic assays; information, education. 2. Measures intended to protect the individual: fundamental rights of the patient: his/her right to confidentiality, to information and to treatment; civil rights: civil liberty, right to education, right to work, etc...; rights of the healthy individual: right of those in contact with the patients, safety of hospital staff, of those receiving blood-transfusions, etc... The legislation adopted in the various countries and the main opinions to be found in these articles are listed and analysed, and for each particular theme it is possible to refer to a list of the 232 most important articles. While the debate seems to concentrate on the conflict between the right of society to protect itself against the spread of infection and the 'civil' rights of the infected minorities, our conclusion tends to reduce this antagonism, showing that, particularly as far as the confidential nature of medical information is concerned, measures intended to protect the individual also protect society. (shrink)

There is consensus that children have questionable decisional capacity and, therefore, in general a parent or a guardian must give permission to enroll a child in a research study. Moreover, freedom from duress and coercion, the cardinal rule in research involving adults, is even more important for children. This principle is embodied prominently in the Nuremberg Code and is embodied in various federal human research protection regulations. In a program named "SATURN", each school in the Oregon public-school system may implement (...) a mandatory drug-testing program for high school student athletes. A prospective study to identify drug use among student-athletes, SATURN is designed both to evaluate the influence of random drug testing and to validate the survey data through identification of individuals who do not report drug use. The enrollment of students in the drug-testing study is a requirement for playing a school sport. In addition to the coercive nature of this study design, there were ethically questionable practices in recruitment, informed consent, and confidentiality. This article concerns the question of whether research can be conducted with high school students in conjunction with a mandatory drug-testing program, while adhering to prevailing ethical standards regarding human-subjects research and specifically the participation of children in research. (shrink)

With more than half of individuals incarcerated having serious mental health concerns, correctional settings offer excellent opportunities for epidemiological, prevention, and intervention research. However, due to unique ethical and structural challenges, these settings create risks and vulnerabilities for participants not typically encountered in research populations. We surveyed 1,224 researchers, Institutional Review Board members, and IRB prisoner representatives to assess their perceptions of risks and vulnerabilities associated with mental health research conducted in correctional settings. Highest ranked risks were related to privacy, (...) stigma, and confidentiality; lowest ranked risks were related to prisoners’ loss of privileges or becoming targets of violence due to having participated in research. Cognitive impairment, mental illness, lack of autonomy, and limited access to services emerged as the greatest sources of vulnerability; being male, being female, being older than age 60, being a minority, and being pregnant were the lowest ranked sources of vulnerability. Researchers with corrections experience perceived lower risks and vulnerabilities than all other groups, raising the question whether these researchers accurately appraise risk and vulnerability based on experience, or if their lower risk and vulnerability perceptions reflect potential bias due to their vested interests. By identifying areas of particular risk and vulnerability, this study provides important information for researchers and research reviewers alike. (shrink)

From their own practices, the authors offer insight into potential ethical dilemmas that may frequently develop in an applied psychology setting in which sport psychology is also being practiced. Specific ethical situations offered for the reader's consideration include confidentiality with coaches, administration, parents, and athlete-clients; accountability in ethical billing practices and accurate diagnosing; identification of ethical boundaries in nontraditional practice settings (locker room, field, rink, etc.); and establishment of professional competence as it relates to professional practice and marketing.

In this paper, we first briefly describe neuroimaging technology, our reasons for studying magnetic resonance imaging (MRI) technology, and then provide a discussion of what we have identified as priority issues for paediatric MRI research. We examine the issues of respectful involvement of children in the consent process as well as privacy and confidentiality for this group of MRI research participants. In addition, we explore the implications of unexpected findings for paediatric MRI research participants. Finally, we explore the ethical (...) issues concerning advances in functional MRI. This paper aims to provide a clear description of priority paediatric MRI research ethics issues to make some preliminary recommendations regarding next steps. (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)