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PubMed2025

A Sociotechnical Approach to Genomic Data Privacy: A Comparative Analysis.

The sharing of genomic data across international borders presents significant privacy law challenges.Secured computed environments on smartphones allow the storing and processing of sensitive data without the underlying data being shared with processors.A novel technology, described here, to process genomic data within a secured computing environment seems to comport with EU and US privacy laws, despite their differing aims and rules.This technology suggests there may be technological solutions to privacy law fragmentation across jurisdictions, so long as data subjects socially trust the technology and have control over their data.

genome↗

PubMed1996

Privacy and autonomy: from Warren and Brandeis to Roe and Cruzan.

Warren and Brandeis' tort against invasion of privacy had chiefly a social goal: to enlist the courts to reinforce the norm of civility. Years later in Griswold v. Connecticut (1965), the Supreme Court announced a constitutional right of privacy that was personal in focus. Here and in subsequent rulings on abortion and the "right to die, " it became apparent that Warren and Brandeis' Victorian "right to be let alone" had metamorphosed into a right to autonomy, whose amoeboid contours made prediction or even description a tricky business. But privacy is an unsatisfactory proxy for autonomy, and perhaps for this reason has dwindled in importance as a rationale in these areas.

Abortion, Legal↗

PubMed2005

Notices of Privacy Practices: a survey of the Health Insurance Portability and Accountability Act of 1996 documents presented to patients at US hospitals.

BACKGROUND: Federal regulation requires hospitals to present patients with a Notice of Privacy Practices (NPP) that contains all stipulated content items, is readable by patients, and posted on institutional web sites. OBJECTIVE: The objective of this study was to determine whether the NPP texts contain the required content, if readability is influenced by local literacy rates, and if readability or the presentation of NPP texts in other languages is influenced by local rates of English proficiency. RESEARCH DESIGN: The authors conducted a cross-sectional study of the web sites of 115 hospitals selected from the US News and World Report list: Best Hospitals in America. MEASURES: English NPP texts were evaluated for 18 content items and readability using the Flesch-Kincaid scale, which assigns the minimal grade level required to read a text (range, 0-16). RESULTS: NPP texts were available for all hospitals (115 of 115). A Spanish-language NPP was available for 25% (29 of 115). All content items were evident in 76% (87 of 115) of hospitals' NPP texts. The average grade-level readability of NPP text was 12.3 (95% confidence interval, 12.0-12.7). Readability was not associated with the rate of local literacy (P = 0.07). Hospitals with a lower local rate of English proficiency had NPP texts that were more difficult to read (P = 0.03) and did not present NPP texts in other languages more frequently (P = 0.15). CONCLUSIONS: Although NPP texts typically cover the stipulated content, they are written beyond the reading capacity of the majority of American adults. Explicit federal guidance is needed to help privacy lawyers draft NPP texts that are both comprehensive and comprehensible. The goals of the Health Insurance Portability and Accountability Act of 1996 Privacy Rule cannot be met with NPP texts patients cannot decipher.

Analysis of Variance↗

PubMed2004

Beyond toleration: privacy, citizenship and sexual minorities in England and Wales.

This paper examines two significant moments in sexual minority citizenship in England and Wales in relation to one of the Marshallian sets of rights, namely, civil or legal rights, focusing specifically on the Sex Offences legislation and policing practices. The first moment that will be examined here is the process whereby homosexual acts were decriminalized in the 1950s and 1960s; here special attention will be paid to the recommendations made by the Wolfenden Committee. The second moment is one we are currently experiencing, which is associated with the inclusive policing of sexual minority communities (especially lesbian, gay, bisexual and transgender communities) under the provisions of the Crime and Disorder Act 1998 and in the review of Sex Offences, especially in the consultation paper (Home Office 2000) and White Paper (Home Office 2002) associated with this review. Privacy and toleration dominate the first moment, at the same time it shall be demonstrated that privacy is also central to the British Sexual Citizenship literatures that have emerged in sociology in the post-Wolfenden context. However, as the title suggests, the second moment under examination points to the emergence of a rather more extensive sexual minority citizenship beyond the boundaries of 'homosexual privacy' (which British Sexual Citizenship Studies is not currently engaging with) and perhaps even beyond the boundaries of toleration through ever more 'inclusive' policing strategies and through the review of sex offences in which many discriminatory laws are being 'de-homosexualized'.

Civil Rights↗

PubMed2006

Impact of privacy legislation on the number and characteristics of people who are recruited for research: a randomised controlled trial.

BACKGROUND: Privacy laws have recently created restrictions on how researchers can approach study participants. METHOD: In a randomised trial of 152 patients, 50-74 years old, in a family practice, 60 were randomly selected to opt-out and 92 to opt-in methods. Patients were sent an introductory letter by their doctor in two phases, opt-out before and opt-in after introduction of the new Privacy Legislation in December 2001. Opt-out patients were contacted by researchers. Opt-in patients were contacted if patients responded by email, free telephone number or a reply-paid card. RESULTS: Opt-in recruited fewer patients (47%; 43/92) after invitation compared with opt-out (67%; 40/60); (-20%; [-4% to -36%]). No proportional difference in recruitment was found between opt-in and opt-out groups varied by age, sex or socioeconomic status. The opt-in group had significantly more people in active decision-making roles (+30%; [10% to 50%]; p = 0.003). Non-significant trends were observed towards opt-in being less likely to include people with lower education (-11.8%; [-30% to 6.4%]; p = 0.13) and people who were not screened (-19.1%; [-40.1% to 1.9%]; p = 0.08). Opt-in was more likely to recruit people with a family history of colorectal cancer (+12.7%; [-2.8%, 28.2%]; p = 0.12). CONCLUSIONS: The number of participants required to be approached was markedly increased in opt-in recruitment. Existing participants (eg, screening attendees) with a vested interest such as increased risk, and those preferring an active role in health decision making and with less education were likely to be recruited in opt-in. Research costs and generalisability are affected by implementing privacy legislation.

Age Factors↗

PubMed2001

Privacy and confidentiality of genetic information: what rules for the new science?

This review covers the ethical, legal, and policy issues associated with the generation and dissemination of genetic information. First, conceptual issues, such as the definition of terms and the description of two modes of analysis, are addressed. Research findings on public attitudes toward privacy and genetics and other factors relevant to policy making are also reviewed. Second, the example of genetic research is used to highlight the importance of attention to the intrinsic harms associated with violations of genetic privacy. Subtopics include national databases and biobanks, gene brokers, and pharmacogenomics. Third, the example of insurer access to genetic information is used to highlight the importance of attention to discrimination and other instrumental harms associated with failures of regulation. Fourth, a summary of the preceding sections leads into an outline of a program for realizing the benefits of the new science in a manner that affirms rather than erodes privacy and other important values.

Confidentiality↗

PubMed2006

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rule: implications for clinical research.

In the short time since it became effective for health care organizations, a privacy regulation issued under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) has had a significant adverse impact on the conduct of clinical research in the United States, without a substantial corresponding increase in privacy protection for research participants. Some of the problems associated with HIPAA have been resolved through revisions since the regulation's initial promulgation in December 2000, and other problems can be addressed by better educating health care providers and researchers about its requirements and available alternatives for compliance; however, considerable structural challenges remain. These constitute substantial barriers to research and resulting medical advances. Additional revisions to HIPAA based on the principles and trade-offs reflected in the Common Rule-which responsibly balances an individual's interest in privacy protection with the public interest in gaining knowledge through biomedical research-can go a long way to remedying remaining flaws in the system.

Biomedical Research↗

PubMed2003

Perceptions of autonomy, privacy and informed consent in the care of elderly people in five European countries: comparison and implications for the future.

This article discusses nurses' and elderly patients' perceptions of the realization of autonomy, privacy and informed consent in five European countries. Comparisons between the concepts and the countries indicated that both nurses and patients gave the highest ratings to privacy and the lowest to informed consent. There were differences between countries. According to the patient data, autonomy is best realized in Spain, privacy in the UK (Scotland), and informed consent in Finland. For the staff data, the best results tended to concentrate in the UK. The conceptual and methodological limitations of the study are identified and discussed. Implications of the results are divided into three areas: nursing practice, education and research. In practice, the analysis of patients' values and the ethical sensitivity of nurses are important as part of ethically good care. In nurse education, students should learn to recognize ethical problems, generally and particularly, among vulnerable groups of patients. Multicultural international research is needed in this area. This is the last of a set of five articles published together in this issue of Nursing Ethics in which the results of this comparative research project are presented.

Adult↗

PubMed2004

The problem of privacy in transcultural research: reflections on an ethnographic study in Sri Lanka.

Western laws and codes of ethics frequently require that private health information be treated confidentially. However, cross-cultural research shows that it is not always easy to determine what members of a culture consider to be private or how they wish private information to be handled. This article begins by presenting an ethnographic study of patient-healer relationships in Sri Lanka; researchers were surprised to find that participants' views of health and privacy differed greatly from typical Western views, and that the privacy protections they had put in place caused discomfort among participants. Building on this ethics case study, the article explores two main questions. First, can a single definition of privacy possibly do justice to the cultural variations that exist, or does a conceptual definition inevitably run the risk of ethnocentrism? Second, to what extent is strict compliance with research regulations or ethics codes ethically justifiable when following the rules will obviously cause unease in international participants?

Anthropology, Cultural↗

PubMedDate not supplied

Autonomy, privacy and informed consent 3: elderly care perspective.

Despite the growing interest in clinical healthcare ethics, there is a dearth of empirical studies investigating the ethical elements of day-to-day clinical practice from the perspective of either patients or staff. This article, the third in a four-part series, reports the results of a Scottish Study that formed part of a multi-site comparative study funded by the European Commission. It explores patient autonomy, privacy and informed consent in the care of elderly people in long-stay care facilities (i.e. nursing homes and continuing care units). A convenience sample of 101 elderly residents and their nurses (n = 160) participated in the study. Data were collected by means of a self-completion questionnaire for staff and a structured interview schedule for elderly residents. Results indicate marked differences between staff's and residents' responses on three of the four dimensions explored: information-giving, and opportunity to participate in decision-making about care and consent. There was much closer agreement between staff's and residents' responses regarding protection of patient privacy. From the results of this study there is indication of a clear need for further empirical studies exploring issues of patient autonomy, privacy and informed consent in the day-to-day nursing care of older people. Findings to date suggest there is still a significant need to educate staff concerning ethical awareness and sensitivity to the dignity and rights of patients.

Aged↗

PubMedDate not supplied

Autonomy, privacy and informed consent 4: surgical perspective.

This is the fourth article in a four-part series that considers the issues of patient autonomy, privacy and informed consent. The article discusses these issues in the context of surgical patients and their nurses. There is an abundance of references to issues of autonomy and informed consent within the healthcare literature, although there are few empirical studies investigating these issues within practice. The issue of privacy has been somewhat less explored than that of autonomy or consent, particularly in the UK literature. This article reports the findings of a Scottish study that formed part of a multisite comparative study funded by the European Commission. A convenience sample of surgical patients (n = 282) and their nurses (n = 260) participated in the study. Data were collected by means of a self-completion questionnaire for both patients and nursing staff. Results indicated that there are significant differences in patient and staff perceptions on issues of patient autonomy, privacy and informed consent. However, the most marked difference in perceptions of patients and staff were found on the information-giving element of the autonomy subscale. Implications for nursing practice, education and research are highlighted.

Humans↗

PubMed1997

Personal privacy in the health care system: employer-sponsored insurance, managed care, and integrated delivery systems.

Widespread collection and use of identifiable information can promote social goods while, at the same time, infringing on personal privacy. Information systems are developing within the context of a fundamental transformation in the organization, delivery, and financing of health care. Changes in the health care system include rapid development of employer-sponsored health coverage, managed care organizations, and integrated delivery systems. These complex, multifaceted arrangements for delivering and paying for health care require ever-more-sophisticated information systems that facilitate extensive sharing of personal data. Systemic flows of sensitive health information occur both vertically and horizontally among employers, hospitals, insurers, laboratories, and suppliers. Beyond this complex web of vertical and horizontal sharing are the multiple demands for information management, quality assurance, research, governmental regulation, and public health. Theoretical problems exist with the law and ethics of informational privacy. The traditional method of exercising control over personal health information is through informed consent. Informed consent, however, within a modern health information infrastructure becomes highly complex. In this kind of environment, the doctrine of informed consent is flawed and does not provide sufficient control over personal information to assure adequate protection of privacy.

Biomedical Research↗

PubMedDate not supplied

Protecting privacy to improve health care.

No comprehensive federal law now protects the privacy of people's medical records. The Health Insurance Portability and Accountability Act of 1996 mandates that if Congress fails to enact such legislation by August 1999, the secretary of health and human services must promulgate regulations. This paper argues that health privacy legislation is necessary both to improve patient care and to enhance the reliability of the health information used for research and public health initiatives. Within this framework I review pending federal health privacy legislation and make recommendations for moving forward.

Humans↗

PubMed1996

[A Japanese version of inventory of orientation toward privacy].

Marshall (1974) and Pedersen (1979) theorized and studied Orientation toward Privacy, but the concept has not been explored extensively in this country. In this study, a Japanese version of their Inventory of Orientation toward Privacy was constructed. In Study 1, translated items of the inventory were examined to see whether they had the same dimensions as the original scale. The results indicated that the dimensions were similar, except an "Anonymity" factor. In Study 2, excluding anonymity items, a 21-item Japanese version was constructed, incorporating Iwata's (1987) findings as well. Factor analysis revealed seven factors, Free will, Intimacy with Friends, Reserve, Intimacy with Family, Seclusion, and Isolation. Finally, in Study 3, the new Inventory was administered to another sample, and its factor structure re-examined. The structure proved to be reasonably stable, and it therefore may be concluded that the scale meaningfully measured Orientation toward Privacy.

Adult↗

PubMed2006

Informed consent for research and authorization under the Health Insurance Portability and Accountability Act Privacy Rule: an integrated approach.

Researchers have found that implementation of the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule is having a negative impact on clinical research. This impact traces, in part, to many research institutions complying with HIPAA by adding lengthy, complex language to their research consent documents. The addition of extensive language burdens institutional review boards and may undermine participants' understanding of the research in which they take part. Comparative analysis reveals, however, that the addition of lengthy text often is unnecessary. The U.S. federal requirements for informed consent for human subjects research and the HIPAA Privacy Rule's requirements for individual authorization overlap substantially. Hence, consent forms that satisfy the U.S. federal regulations for human subjects research need only minimal additional text to also satisfy the authorization requirements under the HIPAA Privacy Rule.

Biomedical Research↗

PubMed1996

Protection of privacy of personal health information: the Australian standard approach.

Effective privacy protection is a difficult problem, but it must be solved if we are to realize the benefits of electronic health information. The Australian Standard Personal Privacy Protection in Health Care Information Systems and its underpinning conceptual model address both the human and the technological parts of a pragmatic solution to privacy based on internationally accepted principles. This standard may offer useful guidance in an international context.

Australia↗

PubMed1996

Measures implemented to project personal privacy for an on-line national patient index: a case study.

Increasing use of electronic data storage and exchange is inevitable. Although of considerable benefit to all concerned, they pose a potential threat to personal privacy. Measures to protect personal privacy in national information networks are essential. These and related security issues require the highest priority in strategic planning because experience shows that poor handling of security is the single factor most likely to lead to rejection of a system. It is increasingly important to be able to identify individuals uniquely for health-related purposes, and implementation of an on-line master index is the approach that has been adopted in New Zealand to address this need. Such an index, however, contains personal information, the privacy of which must be respected. Substituting the unique identifier for all personal details in electronic messages can provide a degree of security as long as access to the index is controlled and usage is monitored. The article outlines the measures, technical and otherwise, implemented to manage security concerns successfully in that context.

Computer Security↗

PubMed1998

Privacy Act of 1974; report of new system--HCFA. Notice of new system of records.

In accordance with the requirements of the Privacy Act of 1974, we are proposing to establish a new system of records, called the "National Provider System (NPS)," HHS/HCFA/OIS No. 09-70-0008. We have provided background information about the proposed system in the "Supplementary Information" section below. Both institutional (e.g., hospitals, skilled nursing facilitaties) and individually identifiable (e.g., physicians and other practitioners) providers are included in the NPS database. The institutional providers' data are covered by section 1106 of the Social Security Act and the Freedom of Information Act, while the individually identifiable providers' data are also covered by the Privacy Act of 1974. Although the Privacy Act requires only that the "routine uses" portion of the system be published for comment, HCFA invites comments on all portions of this notice. See "Effective Dates" for comment period.

Centers for Medicare and Medicaid Services, U.S.↗