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PubMedDate not supplied

[Right to privacy, reservation or secret. Changes in perspective of research on human genome].

1. Three kinds of privacy can be identified: territorial, bodily and, thirdly, psychological or spiritual. Cases and examples of each. 2. Two aspects are involved in breaches of the right to privacy--in any of its three forms-: the actual invasion of someone's privacy and the subsequent publication of the product thereof. 3. The right to privacy can enter into conflict with other constitutionally protected right such as the right to information, freedom of expression and freedom of scientific enquiry. 4. Research on the human genome has opened up a new area in privacy, given that it is unlawful to intrude into the genetic structure of a person without said person's lawful consent. Nothing is more private than a person's own individual genetic code. There may be exceptions to the right to genetic privacy: cases of lawful intrusion. 5. Unwarranted intrusion: discrimination in school admissions, employment contracts and insurance policies.

Genome, Human↗

PubMed2001

National health information privacy: regulations under the Health Insurance Portability and Accountability Act.

Health information privacy is important in US society, but existing federal and state law does not offer adequate protection. The Department of Health and Human Services, under powers granted by the Health Insurance Portability and Accountability Act of 1996, recently issued a final rule providing systematic, nationwide health information privacy protection. The rule is extensive in its scope, applying to health plans, health care clearinghouses, and health care providers (hospitals, clinics, and health departments) who conduct financial transactions electronically ("covered entities"). The rule applies to personally identifiable information in any form, whether communicated electronically, on paper, or orally. The rule does not preempt state law that affords more stringent privacy protection; thus, the health care industry will have to comply with multiple layers of federal and state law. The rule affords patients rights to education about privacy safeguards, access to their medical records, and a process for correction of records. It also requires the patient's permission for disclosures of personal information. While privacy is an important value, it may conflict with public responsibilities to use data for social goods. The rule has special provisions for disclosure of health information for research, public health, law enforcement, and commercial marketing. The privacy debate will continue in Congress and within the president's administration. The primary focus will be on the costs and burdens on health care providers, the ability of health care professionals to use and share full medical information when treating patients, the provision of patient care in a timely and efficient manner, and parents' access to information about the health of their children.

Confidentiality↗

PubMed1982

The basis of privacy and autonomy in medical practice. A model.

Most of the medical literature concerned with privacy seems to be based on the implicit assumptions that there is such a thing as right-to-privacy and that privacy is a worthwhile end unto itself. This paper develops a model which should permit a better and more pragmatic understanding of the moral, ethical and psychosocial bases of these assumptions. Arguments are offered that privacy is, indeed, not mainly an intrinsic value but is more of an instrumental value. It is suggested that privacy, per se, is not an end but is, rather, a means to another end, autonomy. It is important to differentiate autonomy as used here from narcissism; the former is viewed as an advanced stage of cognitive development whereas the latter is a social deviance. The model is developed which states: the analogy of a person is as a unit consisting of a matrix which is unique and autonomous because of its separation from other units by means of a wall-of-privacy; the relationship between persons is measured by their social distance. Derived from this is the 'equation', A approximately equal to (P)(D). Intimacy, substitutive judgement, confidentiality and patient-physician relationship are conceptualized within this model.

Confidentiality↗

PubMed1989

Privacy between physicians and patients: more than a matter of confidentiality.

This study examined patients' perceptions (N = 427) of the meaning of privacy within the physician-patient dyad. The recognition of the importance of privacy, the norms that govern privacy, and the specific behaviors that may be considered to violate privacy in relationships has most often received only general attention by researchers. Recent evidence from the field of communication supports the multidimensional and situational nature of privacy. Thus, in contrast to the usual conception of patient confidentiality as an issue focused on information, confidentiality is cast as a topic within both the informational and psychological realms of privacy. Implications for current medical interviewing practices, especially with regard to questions that concern patients' sexual behavior, are discussed.

Adolescent↗

PubMed2002

Maintaining privacy on post-natal wards: a study in five European countries.

AIM: Maintaining privacy on post-natal wards: a study in five European countries Aim. To describe how mothers' privacy is maintained on post-natal wards in five European countries: Finland, Spain, Greece, Germany and Scotland [United Kingdom (UK)] BACKGROUND: Privacy is an important concept in nursing and nursing ethics. Empirical studies in this field, however, are few. In this study, privacy is defined as comprising both physical and social-informational dimensions and both the perceptions of mothers and professional were investigated. METHODS: The data were collected by a questionnaire from mothers (n=1192) and midwife/nursing staff (n=952). RESULTS: The results revealed differences both between the different countries and between patients' and professionals' views. Mothers in Finland, Germany and Scotland felt their privacy was maintained better than mothers in Greece and Spain. The differences in staff perceptions are less clear-cut. Different background factors emerge as statistically significant in different countries. CONCLUSION: Empirical studies in privacy are important and give ideas about the problems in nursing practice. Future analyses should look also at other areas of nursing.

Adolescent↗

PubMed1996

Assessment of blood donor privacy during health history interviews.

BACKGROUND: Given the personal nature of health history interviews, it is important to provide donors with both visual and auditory privacy. Privacy is affected by variables such as background noise, the use of visual screens, and the loudness of the donor's voice. STUDY DESIGN AND METHODS: In Phase I of this study, an interview station and waiting area were simulated. To measure auditory privacy, a speech intelligibility test was given to subjects with and without the use of a free-standing privacy screen and masking noise device. Phase II was a field trial designed to evaluate screens and masking noise. Background noise was measured during each blood collection operation, and donors completed a survey. RESULTS: In Phase I, speech intelligibility test scores ranged from 78 to 5.1 percent, depending on the type of visual screen and the number of masking noise devices used. In Phase II, with the use of screens, 94 percent of donors rated visual privacy as "good to excellent," compared with 74 percent who did so when no screens were used. At many blood drives, the background noise level exceeded the level of the masking noise. CONCLUSION: The use of visual screens increases donors' perception of visual privacy. The use of masking noise is effective only when the health history interview is conducted under conditions of low background noise levels.

Blood Donors↗

PubMed2002

Privacy in psychiatric treatment: threats and responses.

OBJECTIVE: The author provides an overview of the current status of privacy in psychiatric treatment, with particular attention to the effects of new federal regulations authorized by the Health Insurance Portability and Accountability Act (HIPAA). METHOD: The author reviews the ethical and legal underpinnings for medical privacy, including the empirical data supporting its importance; discusses those portions of the new federal regulations most relevant to psychiatric practice; and suggests steps that psychiatrists can take to maintain their patients' privacy in the new environment. RESULTS: Medical ethics and law, in keeping with patients' preferences, traditionally have provided strong protection for the information that patients communicate while receiving medical care. In general, release of information has required patients' explicit consent. However, limitations of the consent model and technological innovations that permit the aggregation of computerized medical information have led to pressure for greater access to these data. Although the new federal regulations offer patients some additional protections (including security for psychotherapy notes), they also mark a retreat from reliance on patient consent and open up records to previously unauthorized uses, among them law enforcement investigations and marketing and fundraising by health care organizations. However, states retain the power to provide higher levels of protection. CONCLUSIONS: The new regulatory environment is less friendly to medical privacy but still leaves a great deal of discretion in physicians' hands. A commitment to protecting privacy as an ethical norm can be advanced by psychiatrists' requesting patients' consent even when it is not required, by ensuring that patients are aware of the limits on confidentiality, and by avoiding unnecessary breaches of privacy in the course of providing psychiatric care.

Confidentiality↗

PubMed2002

The HIPAA privacy rule: practical advice for academic and research institutions.

The Final Standards for Privacy of Individually Identifiable Health Information (privacy rule) of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 holds particular importance for academic and research organizations because they use patient information in the provision of experimental healthcare services. In developing a strategy to comply with the final privacy rule, these organizations require an understanding of certain standards that hold significance for them. Specifically, organizations should establish patient privacy guidelines for non-employee researchers the organization should consider partners in business with whom the organization should share its researcher guidelines. These organizations also should understand the difference between consent and authorization, how requirements of the final privacy rule build upon those of the Federal Policy for the Protection of Human Subjects, and the differing roles of privacy boards and institutional review boards.

Academic Medical Centers↗

PubMed1998

Privacy and confidentiality in the publication of pedigrees: a survey of investigators and biomedical journals.

CONTEXT: Pedigree diagrams efficiently communicate family information to genetics investigators; however, the publication of pedigrees poses a risk to the privacy and confidentiality of individuals depicted in the diagrams. Two sets of authoritative guidelines have been published to protect the privacy and confidentiality of subjects, but the influence of these guidelines on publication practices for pedigrees is unknown. OBJECTIVE: To determine the attitudes, practices, and experiences of investigators and journals with respect to privacy and confidentiality concerns in the publication of pedigrees. DESIGN: Investigators who have published pedigrees and editors of 26 biomedical journals were surveyed. Journals were reviewed for content in their "information for authors" sections and for documentation of informed consent in articles containing pedigrees. OUTCOME MEASURES: Practices regarding confidentiality and privacy reported by investigators and editors. RESULTS: Of 226 surveys sent to investigators, 177 were returned (78% response rate). Sixty-one investigators (36%) stated that family members were not informed that their pedigree would be published; 131 (78%) do not obtain informed consent specifically for pedigree publication and only 12 (28%) of the 43 who obtained consent obtained consent from all family members depicted. Thirty-two individuals (19%) reported having altered published pedigrees and 14 (45%) of 31 who had altered pedigrees stated that alterations were not disclosed to journals. Of the 14 journals that responded (54% response rate), only 3 reported written policies for managing potentially identifying information. Two journals reported having asked authors to alter pedigrees and 3 stated they had permitted alterations. A review of 5 genetics journals over a 2-year period revealed no documentation of consent for pedigree publication. CONCLUSIONS: Current practices in the publication of pedigrees do not conform with established recommendations and risk the privacy and confidentiality of subjects, often without informed consent. Attempts to address this problem through the alteration of data are being used, although this practice impairs the integrity of scientific communication.

Confidentiality↗

PubMed2001

Privacy issues and the monitoring of sumatriptan in the New Zealand Intensive Medicines Monitoring Programme.

PURPOSE: The purpose of this paper is to describe how the New Zealand (NZ) Intensive Medicines Monitoring Programme (IMMP) functions in relation to NZ privacy laws and to describe the attitudes of patients to drug safety monitoring and the privacy of their personal and health information. METHODS: The IMMP undertakes prospective observational event monitoring cohort studies on new drugs. The cohorts are established from prescription data and the events are obtained using prescription event monitoring and spontaneous reporting. Personal details, prescribing history of the monitored drugs and adverse events data are stored in databases long term. The NZ Health Information Privacy Code is outlined and the monitoring of sumatriptan is used to illustrate how the IMMP functions in relation to the Code. Patient responses to the programme are described. RESULTS: Sumatriptan was monitored in 14,964 patients and 107,646 prescriptions were recorded. There were 2344 reports received describing 3987 adverse events. A majority of the patients were involved in the recording of events data either personally or by telephone interview. There were no objections to the monitoring process on privacy grounds. CONCLUSION: Given the fact that all reasonable precautions are taken to ensure privacy, patients perceive drug safety to have greater priority than any slight risk of breach of confidentiality concerning their personal details and health information.

Attitude↗

PubMed2005

Democracy and genetic privacy: the value of bodily integrity.

The right to genetic privacy is presently being incorporated in legal systems all over the world. It remains largely unclear however what interests and values this right serves to protect. There are many different arguments made in the literature, yet none takes into account the problem of how particular values can be justified given the plurality of moral and religious doctrines in our societies. In this article theories of public reason are used in order to explore how genetic privacy could be justified in a way that is sensitive to the "fact of pluralism". The idea of public reason is specified as the idea that governments should appeal only to values and beliefs that are acceptable to all reasonable citizens in the justification of rights. In examining prevalent arguments for genetic privacy--based on the value of autonomy or on the value of intimacy--it is concluded that they do not meet this requirement. In dealing with this deficiency in the literature, an argument is developed that genetic privacy is fundamental to the democratic participation of all citizens. By referring to the preconditions of democratic citizenship, genetic privacy can be justified in a way that respects the plurality of comprehensive doctrines of morality and religion in contemporary societies.

Democracy↗

PubMed2003

Emergency Department patient perceptions of privacy and confidentiality.

The study objective was to determine if Emergency Department (ED) patients experience breaches of privacy and confidentiality during their ED stay and to determine if the type of room in which the patient is placed affects privacy. We surveyed a convenience sample of ED patients at the conclusion of their ED stay regarding their privacy and confidentiality. Overall, 36% of patients overheard conversations with similar frequencies in walled and curtained rooms. The location of conversations overheard varied depending on the type of patient room, as curtained rooms allowed conversations from adjacent rooms to be overheard and walled rooms allowed more conversations from the hallway or nursing station to be overheard. Patients felt more comfortable giving their history and having physical examinations performed in walled vs. curtained rooms. Inappropriate or unprofessional comments by staff were heard by 1.6% of patients. Health care providers in the ED need to be aware of breaches in confidentiality and privacy, as our patients deserve respect of their privacy and confidentiality during their ED visit.

Adult↗

PubMed2001

Effects of computer surveillance on perceptions of privacy and procedural justice.

Electronic workplace surveillance is raising concerns about privacy and fairness. Integrating research on electronic performance monitoring, procedural justice, and organizational privacy, the author proposes a framework for understanding reactions to technologies used to monitor and control employees. To test the framework's plausibility. temporary workers performed computer/Web-based tasks under varying levels of computer surveillance. Results indicated that monitoring job-relevant activities (relevance) and affording those who were monitored input into the process (participation) reduced invasion of privacy and enhanced procedural justice. Moreover, invasion of privacy fully mediated the effect of relevance and partially mediated the effect of participation on procedural justice. The findings are encouraging for integrating theory and research on procedural justice and organizational privacy.

Adult↗

PubMedDate not supplied

Nurses' views on situations related to privacy in providing home care for persons with long-term mental illness: an exploratory study.

The main aim of this exploratory study was to explore the views of nurses and mental health care workers on situations related to patient privacy in the home care of persons with long-term mental illness in Sweden. A specifically designed questionnaire was developed from theoretical constructs obtained in a qualitative study and distributed to 1,139 respondents. Data from 660 district nurses, psychiatric nurses, and mental health care workers revealed significant differences in perceptions by age, gender, and professional groups. For example, psychiatric nurses and mental health care workers indicated to a greater extent than district nurses feelings that relate to intrusion on patient privacy. Respondents who were 41 years or younger also indicated to a greater extent than those who were older that they felt home care was an intrusion on patient privacy. Moreover, men indicated to a greater extent than women feelings of insecurity in their professional role. Further investigation is needed, especially into how nurses deal with situations that intrude on patient privacy and how nursing intervention impacts on the patients' own sense of privacy.

Adult↗

PubMed2026

PRISM-G: an interpretable privacy scoring framework for assessing risk in synthetic human genome data.

MOTIVATION: Synthetic genomic data promises broader data access, but unresolved privacy risks remain a major concern. Existing evaluations often rely on similarity-based metrics that measure proximity between real and synthetic genomes, overlooking additional mechanisms through which genomic information may leak. RESULTS: We introduce PRISM-G, a model-agnostic framework that quantifies privacy exposure in synthetic genomic data across three complementary components: proximity to real genomes in genetic-coordinate space, replay of familial or population-structure patterns, and trait-linked exposure through rare variants and membership-inference signals. These components are normalized and combined through a risk-averse aggregation into a single 0-100 PRISM-G score. By pairing PRISM-G with downstream utility metrics, the framework also enables analysis of privacy-utility trade-offs across generative models. We evaluated PRISM-G on synthetic cohorts generated by a generative adversarial network (GAN), a restricted Boltzmann machine (RBM), and a logic-based SAT solver (Genomator). Our results show that privacy vulnerabilities arise along different axes across models and marker densities, demonstrating that a single similarity-based metric is insufficient to characterize genomic privacy risk. AVAILABILITY AND IMPLEMENTATION: The source code of PRISM-G is available at https://github.com/alejocrojo09/prismg.

Humans↗

PubMed1997

Confidentiality and privacy breaches in a university hospital emergency department.

OBJECTIVE: To determine the frequency of visual and auditory confidentiality and privacy breaches in a university ED. METHODS: A prospective, observational study of medical personnel behavior was performed using participant and direct observation techniques. Observations were made in a university tertiary referral and trauma center emergency facility. Observers recorded auditory and visual confidentiality and privacy breaches in various patient care areas during 1-hour periods. Information collected included patient name or room number, complaint/diagnosis, diagnostic tests, past medical history, and personal information. It was then determined whether a clear identification of the patient's name or face and/or an association to his or her clinical course could be made. RESULTS: All members of the health care team committed confidentiality and privacy breaches. Frequency of breaches was dependent on room location and design. Breaches in the triage/waiting area occurred for > 53% of the patients. Breaches near the physician/nursing station ranged from 3 to 24 per hour and 1.5 to 3.4 per patient hour. Other inappropriate comments also were noted. One hundred consecutive patients and family members were interviewed at ED release, with only 2/100 having noticed the status board, although neither could recall any specific details. CONCLUSION: Confidentiality and privacy breaches occur in a university ED by all members of the health care team. The ED architecture and floor plan affect patient confidentiality and privacy.

Attitude to Health↗

PubMedDate not supplied

Autonomy and clinical practice. 2: Patient privacy and nursing practice.

This article, the second in a series of three considering issues of autonomy, privacy and informed consent in nurse/patient interactions, focuses on the wider conceptions of patient privacy and confidentiality. Given that patients in institutional care are likely to suffer intrusions into their privacy which would be considered unusual in normal social interaction, it is interesting to note the dearth of literature in this area. Some definitions of privacy are considered in an attempt to begin to raise readers' awareness of the complexity of this notion. It can be argued that privacy is a pertinent notion to consider, both in order to gain a greater understanding of what is meant by the term and in terms of the implications of this understanding for clinical practice.

Confidentiality↗

PubMedDate not supplied

Autonomy, privacy and informed consent 2: postnatal perspective.

The nursing and healthcare ethics literature over the past 10 years has focused on issues of patient autonomy and patient rights. Despite the growing volume of literature exploring such topics, there is little empirical work investigating what is actually happening in clinical nursing or midwifery practice in relation to patient autonomy, privacy or informed consent, from the perspective of either patients or staff. This four-part series reports the results of a Scottish study that formed part of a multisite comparative research project funded by the European Commission, investigating issues of patient autonomy, privacy and informed consent. This article, the second of four, explores the issues of autonomy, privacy and informed consent in maternity care. The research questions asked were: (1) What is the perception of mothers' autonomy, privacy and informed consent in Scottish NHS hospitals, from the point of view of both mothers and midwives? (2) Are there differences in the perceptions of mothers and midwives on these issues? Data were collected by a self-completion questionnaire for mothers (n = 243) and staff (n = 170) on postnatal units in both district general and university teaching hospital. Results indicated that there are differences between the perceptions of mothers and midwives in relation to mothers' autonomy, privacy and informed consent. Most differences were found in the information-giving and decision-making elements of autonomy.

Decision Making↗