Absolute Confidentiality Research Articles

The information minefield: access to clinical information: review article

A crucial element of any fiduciary relationship is the maintenance of confidentiality. While the obligation to keep detailed records remains, the South African Constitution and legislation have eroded the clinician's ability to absolutely safeguard their patients' privacy. Clinicians cannot guarantee absolute confidentiality and should always warn patients of the limits of privilege in their relationship (especially in forensic settings). A bewildering array of interested parties may now petition for access to clinical information, and it is not always clear under which circumstances legislation demands disclosure, and when ethical considerations prevent it. It is therefore encumbent on practitioners to understand when disclosure is sanctioned, and when the demands of legislation cannot be resisted. South African Psychiatry Review Vol.7(1) 2004: 19-20, 23-26

In Defense of Absolute Confidentiality

Examination of Confidentiality in Psychiatry after Tarasoff In 1968 two students at the University of California at Berkley, Tatiana Tarasoff and Prosenjit Poddar, met and began dating. Poddar believed the relationship to be more serious than Tarasoff did and became preoccupied and withdrawn when she rejected him. In the summer of 1969 Tarasoff left the country to do field work. Poddar went to the university health service for treatment of his depression.

Discussion: Anticipating Problems—Doing Social Science Research in the Shadow of the Law

As a social science researcher, should you promise full confidentiality to the people that you are studying? If the government or a private plaintiff wants your research notes or records, will you be put to the choice of either breaking your confidences or going to jail? In their provocative article, Anticipating Law, Ted Palys and John Lowman suggest that those researchers who design their projects so as to maximize the need for confidences and who actually make stronger promises of confidentiality may be able to give both their participants and themselves more legal protection. This strategic use of the law is both the paper's strength and its primary danger. While many (if not most) researchers blithely promise their participants absolute confidentiality, the more sophisticated among them have been promising much less. During my own Ph.D. training at the University of Chicago, Professor Norman Bradbum, who was also the Research Director of the National Opinion Research Center, instructed his graduate students not to promise any more than you can deliver. He recommended promising to keep information confidential only to the extent that the law allows.

Above the Law: Research Methods, Ethics, and the Law of Privilege

In Anticipating Law: Research Methods, Ethics and the Law of Privilege, -- J. Sociological Methodology -- (2002), Ted Palys and John Lowman set forth the rationale for a and advise scholars how best to preserve the confidentiality of their research in the face of a legal system that has not looked kindly on such a privilege. Although recognition of a researcher-participant privilege would, on balance, be beneficial, the case for the privilege is hardly self-evident. This paper reviews some of the reasons why courts and legislatures have not embraced such a privilege. The paper also explores the advice Palys and Lowman offer researchers in the absence of such a privilege (to promise research-participants absolute confidentiality, even if the researcher will have to defy a court order to satisfy the promise) and concludes that their advice is unwise and, arguably, unethical.

The Rights of the Adolescent: The Mature Minor

Health care providers who treat adolescents may also be required to diagnose and treat the reproductive health conditions of miner patients and to facilitate health prevention measures, including contraception and testing for sexually transmitted diseases. Teens who do not want their parents to know about their sexual behaviour may consult a health care provider for reproductive or sexual health care services and treatment without parental knowledge or consent. This may present legal and ethical dilemmas for health care providers. Common law recognizes that adolescents under the legal age of majority who are sufficiently mature (the mature miner) may have the capacity to consent to health care services with the same independence as adults. Such capacity to consent needs to be determined on an individual basis. Where there is disagreement between a mature miner and her parent(s) about a medical procedure or treatment, the wishes of the adolescent should prevail. Under law, a married miner is usually treated as having attained majority status; however, fertility services cannot ethically be denied if the unmarried adolescent is found capable and they are required medical services for that individual. Parents or legal guardians generally have the legal authority and responsibility to act as surrogate decision makers for adolescents found incapable of making their own health care decisions. Although confidentiality is essential, there are some exceptions to absolute confidentiality.

Attitudes of Icelandic Young People Toward Sexual and Reproductive Health Services

Iceland has higher levels of fertility among both adult women and adolescents than many other western European countries. There is a need to make sexual and reproductive health services more accessible to teenagers in Iceland. A descriptive, cross-sectional national postal survey was conducted in 1996 to explore the attitudes of 2,500 young people aged 17-20 toward sexual and reproductive health services in Iceland and to determine which factors might be of importance for the development of such services. Icelandic adolescents want specialized sexual and reproductive health services offered within a broad-based service setting. Half of them would prefer to have these services located in a sexual and reproductive health clinic, and about one-third want such services to be located in community health centers. Having services that are free, that are anonymous and that do not require an appointment are important to teenagers who live in Reykjavik, but proximity and equal access to services are more highly valued by adolescents who live outside Reykjavik. Characteristics that young women, in particular, value include close proximity to services, access to a comfortable environment, a friendly staff, absolute confidentiality, and the ability to come with a friend and to have enough time for discussion. Adolescents who have already used contraceptive services mentioned that they need enough time for discussion and that they value high-quality client-provider interaction. The attitudes of adolescents should be considered when specialized sexual and reproductive health services are developed for young people in Iceland. Specialized services that respond to the unique concerns of adolescents may increase their utilization of contraceptive methods and other reproductive health services.

An association between the regular use of 3,4 methylenedioxy-methamphetamine (ecstasy) and excessive wear of the teeth.

This study was established to determine if users of ecstasy had greater tooth wear than a comparison group of non-users. The study involved a direct comparison between two groups of young people gathered by a peer information network and divided by the response to the question "Do you take ecstasy?" The information network was established at the Maryland Centre in Liverpool (UK). Besides offering advice on drug and sex-related problems this centre distributes free condoms and is therefore visited by many young people who would not consider themselves to have these problems. There were 30 users and 28 non-users with no significant difference in the gender ratio. Age was not recorded to maintain absolute confidentiality, but all the participants appeared to be of student age. Tooth wear was measured using the index of Smith & Knight. The social and drug-taking profile of the two groups was ascertained by questionnaire. It was found that the mean (+/- STD) tooth wear score for the back teeth was 0.96 +/- 0.16 in the users compared with 0.12 +/- 0.08 for the comparison group. These values were significantly different (p < 0.001). The values for the front teeth were not significantly different. Many users were aware of clenching their teeth 12 or even 24 hours after taking the drug. Taking ecstasy results in an increased likelihood of tooth wear on the back teeth. This is likely to result from clenching the teeth in the acidic environment caused by carbonated (fizzy) drinks.

Collecting "Sensitive" Data in Business Ethics Research: A Case for the Unmatched Count Technique (UCT)

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.

Day to day maintenance of confidentiality: practices and beliefs of trainee and qualified clinical psychologists in the UK

Day to day maintenance of confidentiality by clinical psychologists is one of several areas of ethical practice that has been little researched in the UK. This study describes results from a survey of clinical psychologists working in the adult mental health speciality and a comparison group of trainee psychologists. Respondents rated the frequency with which they practised 11 behaviours relating to unintentional disclosure of information, discussion of cases and securing files. They also rated the ethical acceptability of the same 11 behaviours. Qualitative data on the constraints on maintaining confidentiality were also collected. Results demonstrated that absolute confidentiality was not the norm and that clinicians' practices fell short of their beliefs about ethical acceptability. The results and their implications are discussed along with suggestions for further research.

Absolute confidentiality is essential to assure a good response rate and honest answers

Absolute confidentiality is essential to assure a good response rate and honest answers

Principles of health care ethics

Partial table of contents: APPROACHES TO APPLIED HEALTH CARE ETHICS. The 'Four Principles' Approach (T. Beauchamp). Medical Ethics, Kant and Mortality (S. Furness). RELATIONSHIPS AND HEALTH CARE ETHICS. The Doctor-Patient Relationship (R. Downie). Absolute Confidentiality? (D. Black). MORAL PROBLEMS IN PARTICULAR HEALTH CARE CONTEXTS. Ethical Problems in Infertility Treatment (R. Snowden & E. Snowden). Children: Problems in Pediatrics (P. Graham). HEALTH CARE ETHICS AND SOCIETY. Medical Research, Society and Health Care Ethics (T. Ackerman). AIDS: Health Care Ethics and Society (A. Pinching). ETHICAL PROBLEMS OF SCIENTIFIC ADVANCE. Genetic Counseling (M. Seller). Against Brainstem Death (M. Evans). Index.

The travails of Martin Orne: On privacy, public disclosure, and confidentiality in psychotherapy

The experiences of one psychotherapist have brought to the fore the entire issue of privacy and confidentiality and the responsibilities of mental health professionals. In a computer driven culture, where data about patients become subject to public scrutiny, how does the mental health professional practice, guided by the concept of confidentiality? Where does confidentiality begin and end? What about the patient's right to self-disclose? What about patient autonomy? In this paper, illustrated by one particular case where the rule of absolute confidentiality, an intrinsic part of the practice of psychotherapy, was questioned, our current confusion comes to the surface. The reader is urged to re-think the concept of confidentiality and patient self-disclosure.

The ethics of genetic screening: the first report of the Nuffield Council on Bioethics: another personal view.

In the previous issue of the journal Dr Gillon opened up a debate about the role and work of the Nuffield Council through the critical comments he offered on the council's first report, Genetic Screening: Ethical Issues (1). He did so in a manner which was, to borrow his words, 'liberal, commonsensical and humane'. I am grateful for his personal invitation to respond as Executive Secretary of the council. He also deserves the thanks of the council itself. The report was intended to provoke public discussion. As the chairman's preface made clear: 'The report could not hope to identify exhaustively, let alone answer, all the ethical questions which may confront individuals, families and professionals' (2). What the council had sought to do was to expose 'the complex range of ethical issues ... to wide professional and public debate'. Dr Gillon's editorial makes a welcome contribution to that debate; after an admirable introductory summary of the report's conclusions and recommendations, he sets out a challenge to what he describes as 'the relative lack of academic rigour of its argument and justification for its conclusions', and to what, in his view, is the Nuffield Council's failure to measure up to 'the Gold Standard of such reports provided by the US President's Commission on Bioethics' (1). To consider first the specific example cited by Dr Gillon: the 'release of genetic information to potentially seriously affected family members. The council hardly acknowledges the existence of arguments in favour of maintaining absolute confidentiality ...' (3). But, as the report points out: 'the duty of confidentiality is not absolute' (4) whether under common law, under the Data Protection Act 1984, or under the General Medical Council's guidance to doctors. This follows a lengthy passage (5) that starts with an exposition of 'the importance of confidentiality'. Dr Gillon goes on to say that the report presents no argument at all against making appropriate sharing with family members a condition of screening.

Psychologists' beliefs concerning confidentiality with suicide, homicide, and child abuse.

A large number of psychologists from the Division of Psychotherapy and the Division of Psychologists in Practice were surveyed to determine their attitudes about confidentiality. It was found that psychologists reference their personal code to a considerable extent when making decisions about breaching confidentiality and when providing information to their clients about confidentiality. Approximately one-fourth of the respondents believed in absolute confidentiality. These respondents were found to differ from those respondents who did not believe in confidentiality with respect to their actions as therapists, their beliefs about the effects of informing clients concerning limits of confidentiality, and their actually breaching of confidentiality. The two groups differed much less with reference to items that assessed knowledge of matters pertaining to confidentiality, as well as information afforded their clients. Possible stress and conflict experienced by those believing in absolute confidentiality, in light of legal and APA mandates, is discussed along with the need for future research.

Ethical issues in criminal forensic evaluation.

Psychiatric practices have been widely intervened by third parties, so that absolute confidentiality cannot be demanded. Forensic psychiatry holds a distinctive position in such practices. Ethics in forensic evaluations rely on the role of the psychiatrist. That role must be provided not only within the relationship with the truster, but also with the evaluee. The latter relationship has seldom been discussed. It is not therapist-patient-relationship, leaving some therapist attitude. A warning (lack of confidentiality, etc.) is necessary before the evaluation. Despite all, psychiatric evaluations cannot be conducted without some reliance. It is important to inform the evaluee of the evaluator's opinion prior to the trial, and involve the evaluee in the process of the evaluator's recognition.

The rights of patients versus the obligations to sponsors in clinical trials

A recent exchange of Letters to the Editor in The Lancet [1,2], has made it evident that the Note for Guidance on Good Clinical Practice for Trials on Medicinal Products in the European Community [3], does not provide sufficient advice on the relation between the patient or volunteer on the one hand and the sponsor and his non-physician executive (e.g. monitors) on the other. Although there is no doubt that the patient's interests as represented by the physician have absolute precedence, the latter's responsibilities are listed after those of the sponsor and monitor. Accordingly, two important rights of the patient, i.e. that of the absolute confidentiality of his history and his clinical data as well as of the right to determine with his physician when to terminate his treatment, are insufficiently dealt with. As has been emphasized by Deutsch et al. [1], the non-physician monitor should, according to the guidelines, assure .. i that informed consent is being obtained and recorded from all patients. Since the signature of the patient is to be proof of his consent, the confidentiality is already broken. He should further check the CRF entries with the source documents, which invariably contain the names of patients at many points, and it is impossible to ensure that all these are blacked out. The Guidelines put the responsibility for discontinuing the trial squarely with the sponsor (2.3 c). The reasons for discontinuance may relate to the subject's safety but they may equally well be organisational or even commercial. There may be occasions where the abrupt discontinuation of drug treatment may be detrimental to the patient or where the change to a replacement medicine may be not without risk to the patient. In diseases in which the drug on trial may be the first efficacious agent to become available (e.g. erythropoietin) a premature termination

Warning third parties at risk of AIDS: APA's policy is a barrier to treatment

The American Psychiatric Association has adopted a policy stating that psychiatrists may warn third parties who are placed at risk by the behavior of a patient infected with human immunodeficiency virus (HIV). The author argues that although the policy appears reasonable and has well-established precedent, the public will ultimately be better served if HIV-infected patients are assured absolute confidentiality. He contends that the Tarasoff decision is not directly applicable to most HIV-infected patients, that education alone will not be sufficient to deter some infected patients from placing others at risk, that additional psychiatric interventions will be necessary to reduce the high-risk behaviors of those individuals, and that APA's policy will prevent many from seeking treatment.

Warning third parties at risk of AIDS: APA's policy is a barrier to treatment.

The American Psychiatric Association has adopted a policy stating that psychiatrists may warn third parties who are placed at risk by the behavior of a patient infected with human immunodeficiency virus (HIV). The author argues that although the policy appears reasonable and has well-established precedent, the public will ultimately be better served if HIV-infected patients are assured absolute confidentiality. He contends that the Tarasoff decision is not directly applicable to most HIV-infected patients, that education alone will not be sufficient to deter some infected patients from placing others at risk, that additional psychiatric interventions will be necessary to reduce the high-risk behaviors of those individuals, and that APA's policy will prevent many from seeking treatment.

Institutional Factors Affecting Teenagers' Choice and Reasons for Delay in Attending a Family Planning Clinic

This study explores the reasons why teenagers coming for professional birth control help for the 1st time choose the particular clinic in which they enrolled and the clinic characteristics which may encourage the young patients to come for contraceptive help early or contribute to a delay in seeking services. 1234 never pregnant teenagers in 31 family planning clinics of various types in 8 cities answered a questionnaire in the spring of 1980. About 44% of the respondents were white, 48% black and the rest from other racial groups. Just over 14% came to the clinic before 1st coitus, 36% came only because they suspected they were pregnant, and the rest enrolled after they began intercourse but did not suspect pregnancy. The interval between intercourse and enrollment ranged from a few weeks to 2 years with a median interval of 11.5 months. There were 15 possible responses to the question, "Why did you choose this clinic?" The 5 principal reasons given in order were: It doesn't tell their parents; the people there care about teens; it is the closest, their friends come to it; and it is the only 1 they know of. Also significant was, for blacks only, an adult, usually the mother, chose the clinic. Additional information on responses to this question and others is given in charts. The questionnaire also showed a consistent but weak association between the reasons for selecting a particular facility and the characteristics of the clinic such as cost of services, special teen hours, teen rap sessions, and outreach program. The responses indicated that many factors including age, race, and the time when the teenager 1st seeks clinic services affect her choice. The conclusion drawn is that a network of facilities with a variety of services is needed with the common characteristics of open caring atmosphere, women clinicians available and absolute confidentiality so that the proportion of young women who appear only after they are pregnant might be greatly reduced.

Informed Consent: Consequences for Response Rate and Response Quality in Social Surveys

The study described in this paper was designed to measure the effects of variations in (1) the amount of information provided to respondents about the content of a survey ahead of time, (2) the assurance of confidentiality given to respondents, and (3) the request for and timing of a signature to document consent on three aspects of social surveys: (a) overall response rate, (b) response rates to individual questions, and (c) response quality. That is, the study was designed to measure the impact of informed consent procedures on response rates and response quality in social survey research. For this purpose, a fully crossed 2 x 3 x 3 factorial design was imposed on a national probability sample of 2,084 potential respondents. The questionnaire consisted of a large number of items in such presumably sensitive areas as drinking, marijuana use, sexual behavior, and mental health, in addition to more conventional questions about leisure activities. Majorfindings can be summarized as follows: 1. The overall response rate to the survey was 67%; of the three variables investigated, only the request for a signature had a significant effect on the probability of responding. Seventy-one percent of those not askedfor a signature were interviewed, compared with 64% and 65% of those asked to sign before and those asked to sign afterwards. 2. Only the assurance of confidentiality had a significant effect on item nonresponse. Despite the sensitive nature of the interview, nonresponse to individual questions was very low. On those questions to which the nonresponse rate totaled more than 3%-all of them questions about behavior rather than attitudes-respondents given an assurance of absolute confidentiality had a lower nonresponse rate than those in two other experimental groups, in some cases by a statistically significant margin. 3. None of the three independent variables had either consistent or large effects on the quality of response. However, there are suggestions in the data that asking for a signature before the interview has a sensitization effect, so that better data are obtained if the respondent is asked to sign a consent form afterwards.