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At least 19 recordsLinked to original sources
PubMed2002

Altered states: state health privacy laws and the impact of the Federal Health Privacy Rule.

Although the Federal Health Privacy Rule has evened out some of the inconsistencies between states' health privacy laws, gaps in protection still remain. Furthermore, the Federal Rule contains some lax standards for the disclosure of health information. State laws can play a vital role in filling these gaps and strengthening the protections afforded health information. By enacting legislation that has higher privacy-protective standards than the Federal Health Privacy Rule, states can play three important roles. First, because they can directly regulate entities that are beyond HHS's mandate, states can afford their citizens a broader degree of privacy protection than the Federal Health Privacy Rule. Second, by having state health privacy laws, states can enforce privacy protections at the local level. Finally, action by the states can positively influence health privacy policies at the federal level by raising the standard as to what constitutes sufficient privacy protection. High privacy protections imposed by states may serve as the standard for comprehensive federal legislation, if and when Congress reconsiders the issue. So far, states' reactions to the Federal Privacy Rule have been mixed. Only time will tell whether states will assume the mantle of leadership on health privacy or relinquish their role as the primary protectors of health information.

Government Regulation↗
PubMed2004

Disentangling privacy from property: toward a deeper understanding of genetic privacy.

With the mapping of the human genome, genetic privacy has become a concern to many. People care about genetic privacy because genes play an important role in shaping us--our genetic information is about us, and it is deeply connected to our sense of ourselves. In addition, unwanted disclosure of our genetic information, like a great deal of other personal information, makes us vulnerable to unwanted exposure, stigmatization, and discrimination. One recent approach to protecting genetic privacy is to create property rights in genetic information. This Article argues against that approach. Privacy and property are fundamentally different concepts. At heart, the term "property" connotes control within the marketplace and over something that is disaggregated or alienable from the self. "Privacy," in contrast, connotes control over access to the self as well as things close to, intimately connected to, and about the self. Given these different meanings, a regime of property rights in genetic information would impoverish our understanding of that information, ourselves, and the relationships we hope will be built around and through its disclosure. This Article explores our interests in genetic information in order to deepen our understanding of the ongoing discourse about the distinction between property and privacy. It develops a conception of genetic privacy with a strong relational component. We ordinarily share genetic information in the context of relationships in which disclosure is important to the relationship--family, intimate, doctor-patient, researcher-participant, employer-employee, and insurer-insured relationships. Such disclosure makes us vulnerable to and dependent on the person to whom we disclose it. As a result, trust is essential to the integrity of these relationships and our sharing of genetic information. Genetic privacy can protect our vulnerability in these relationships and enhance the trust we hope to have in them. Property, in contrast, by connoting commodification, disaggregation, and arms-length dealings, can negatively affect the self and harm these relationships. This Article concludes that a deeper understanding of genetic privacy calls for remedies for privacy violations that address dignitary harm and breach of trust, as opposed to market harms, as the property model suggests.

Commodification↗
PubMed2001

Informational privacy and the public's health: the Model State Public Health Privacy Act.

Protecting public health requires the acquisition, use, and storage of extensive health-related information about individuals. The electronic accumulation and exchange of personal data promises significant public health benefits but also threatens individual privacy; breaches of privacy can lead to individual discrimination in employment, insurance, and government programs. Individuals concerned about privacy invasions may avoid clinical or public health tests, treatments, or research. Although individual privacy protections are critical, comprehensive federal privacy protections do not adequately protect public health data, and existing state privacy laws are inconsistent and fragmented. The Model State Public Health Privacy Act provides strong privacy safeguards for public health data while preserving the ability of state and local public health departments to act for the common good.

Community Health Planning↗
PubMed1967

Privacy and behavioral research. Preliminary summary of the report of the panel on privacy and behavioral research.

From our examination of the relation of behavioral science research to the right to privacy, we have been led to the following conclusions. 1) While most current practices in the field pose no significant threat to the privacy of research subjects, a sufficient number of exceptions have been noted to warrant a sharp increase in attention to procedures that will assure protection of this right. The increasing scale of behavioral research is itself an additional reason for focusing attention in this area. 2) Participation by subjects must be voluntary and based on informed consent to the extent that this is consistent with the objectives of the research. It is fully consistent with the protection of privacy that, in the absence of full information, consent be based on trust in the qualified investigator and the integrity of his institution. 3) The scientist has an obligation to insure that no permanent physical or psychological harm will ensue from the research procedures, and that temporary discomfort or loss of privacy will be remedied in an appropriate way during the course of the research or at its completion. To merit trust, the scientist must design his research with a view to protecting, to the fullest extent possible, the privacy of the subjects. If intrusion on privacy proves essential to the research, he should not proceed with his proposed experiment until he and his colleagues have considered all of the relevant facts and he has determined, with support from them, that the benefits outweigh the costs. 4) The scientist has the same responsibility to protect the privacy of the individual in published reports and in research records that he has in the conduct of the research itself. 5) The primary responsibility for the use of ethical procedures must rest with the individual investigator, but government agencies that support behavioral research should satisfy themselves that the institution which employs the investigator has effectively accepted its responsibility to require that he meet proper ethical standards. 6) Legislation to assure appropriate recognition of the rights of human subjects is neither necessary nor desirable if the scientists and sponsoring institutions fully discharge their responsibilities in accommodating to the claim of privacy. Because of its relative inflexibility, legislation cannot meet the challenge of the subtle and sensitive conflict of values under consideration, nor can it aid in the wise decision making by individuals which is required to assure optimum protection of subjects, together with the fullest effectiveness of research.

Ethics↗
PubMed1991

Protecting human research from an invasion of privacy: the unintended results of the Commonwealth Privacy Act 1988.

In accordance with the Privacy Act 1988 (Cth), interium guidelines for the protection of privacy in the conduct of medical research have been issued by the National Health and Medical Research Council (NHMRC) with the approval of the Privacy Commissioner. The guidelines are intended to ensure that the privacy of the individual is not interfered with when a researcher seeks the release of personal information held by a Commonwealth agency, or when a Commonwealth agency conducts medical research, and to ensure that the conduct of medical research is not inhibited by the privacy legislation. However, the procedures established by the guidelines and the responsibilities placed upon researchers and institutional ethics committees could themselves have the effect of inhibiting research. In considering amendment, NHMRC and the Privacy Commissioner are urged to produce final guidelines which do not act as the straw to break the back of the current system of institutional ethics committees, which seeks to ensure proper ethical scrutiny and the facilitation of human research.

Advisory Committees↗
PubMed2005

Does privacy matter? Former patients discuss their perceptions of privacy in shared hospital rooms.

As a relative concept, privacy is difficult to define in universal terms. In the New Zealand setting recent legislation aims to protect patients' privacy but anecdotal evidence suggests that these policies are not well understood by some providers and recipients of health care. This qualitative study set out to identify some of the issues by exploring former patients' perceptions of privacy in shared hospital rooms. The findings suggest a conditional acceptance of a loss of privacy in an environment dictated by architectural structure and by fiscal and time constraints. Participants indicated an awareness that personal information could be overheard and that their preference for a choice of setting for serious discussions was desirable. Some enjoyed the support offered in shared rooms, while, for others, overhearing another person's health issues caused unnecessary distress. The participants suggested that knowing they could be overheard constrained information disclosure. This withholding of information has implications for health professionals' ability to diagnose and treat patients appropriately.

Adolescent↗
PubMed2005

Privacy protection for clinical and genomic data. The use of privacy-enhancing techniques in medicine.

Privacy includes the right of individuals and organisations to determine for themselves when, how and to what extent information about them is communicated to others. The growing need of managing large amounts of both clinical and genetic data raises important legal and ethical challenges. This paper introduces some of the privacy-protection problems related to classical and genomic medicine, and highlights the relevance of trusted third parties and of privacy-enhancing techniques (PETs) in the context of data collection, e.g., for research. Practical approaches based on two pseudonymisation models, for both batch data collection and interactive data storage, are presented. The actual application of the described techniques today proves the possible benefits for medicine that innovative privacy-enhancing techniques can provide. Technical PET solutions can unlock valuable data sources, otherwise not available.

Belgium↗
PubMed2000

A critical analysis of Health and Human Services' proposed health privacy regulations in light of the Health Insurance Privacy and Accountability Act of 1996.

Dr. Eddy inquires, through a detailed analysis of relevant statutory provisions, whether it is likely that the HIPAA legislation or the Standards for Privacy of Individually Identifiable Health Information Regulations (SPIIHI) proposed by HHS will efficiently and cost effectively defend the privacy issues they were intended to safeguard. His paper critically analyzes the extremely broad and expensive course of action and tactics HHS has chosen to employ in this effort to determine whether HHS' proposal is an efficient use of health care dollars. To introduce his analysis, Dr. Eddy addresses the general concept of medical privacy and attempts to define what aspects of privacy that HIPAA and SPIIHI should protect. He challenges whether the proposed regulations are focused on existing problems and whether HHS has exceeded legislative mandates.

Civil Rights↗
PubMed2002

The Privacy Rule: HIPAA standards for the privacy of individually identifiable health information.

The main objective of the HIPAA Privacy Rule is to provide a uniform and simplified minimum standard for the privacy of individually identifiable health information. Five broad categories are covered: boundaries, security, consumer control, accountability and public responsibility. Compliance with the Privacy Rule includes appointing a security official, making some basic assessments about a fund's current policies and procedures, assessing security protocols for network systems, developing a participant complaint mechanism and creating an internal grievance procedure for employer action and employee whistle-blowing. At this writing, although the final standards are still under debate, most health care plans should accept the regulation and begin compliance procedures. Successful implementation of the Privacy Rule can streamline fund operations and give participants the added security and peace of mind they demand.

Community Participation↗
PubMed1998

Privacy or help? The use of curtain positioning strategies within the maternity ward environment as a means of achieving and maintaining privacy, or as a form of signalling to peers and professionals in an attempt to seek information or support.

Midwives in the local maternity unit had noted that the interactions between women within the ward environment had started to decline. Women were spending long periods of time behind curtains drawn around their bed space. The staff hypothesized that this was because women desired the privacy of a single room. The literature review revealed a lack of understanding of the concept of privacy within a ward environment from a nursing or midwifery perspective. The review therefore, concentrated on the information offered by the fields of psychology and sociology. This study aimed to observe the methods women use to maintain or preserve their privacy within the ward environment. An ethnographic approach was used incorporating use of documentary evidence, participant observation and discussion, field maps and field notes. The findings of this study centred around the use of curtain positioning, subsequently referred to as 'signalling'. The strategies employed by women included complete closure for total withdrawal, semi-closure for seeking information or support, and partial closure of curtains around the individual's bed space for periods of solitude or rest. The findings have implications for both general and maternity hospital wards but in particular, wards within maternity units that incorporate women with mixed methods of infant feeding, or women in labour mixed with either postnatal or antenatal women.

Delivery Rooms↗
PubMed2005

Privacy and dignity of cancer patients: a qualitative study of patients privacy in UK National Health Service patient care settings.

BACKGROUND: I undertook this research to determine the extent to which privacy and dignity of National Health Service (NHS) patients were respected by health practitioners. METHODS: I used the principles of ethnography to undertake fieldwork observation of 3 wards within a general hospital to interpret the culture of the wards and its impact on the perception and behaviors of patients and staff. I used grounded theory and phenomenology to analyze the perceptions and experiences. RESULTS: I organized the data into 11 key categories. I adopted the classic works of Goffman as interpretative tools, which led to the formation of a privacy model. CONCLUSION: Analysis of the categories established that patients had very little privacy in acute wards of NHS hospitals.

Attitude of Health Personnel↗
PubMedDate not supplied

Medical privacy: from the 4th Amendment to HIPAA. Right to privacy vs. public health: showdown looms over patient genetic information.

Newly adopted federal privacy regulations set a high standard for control of medical information that all medical offices and clinics must meet. Yet, the federal government can't even secure its own database of medical information. We have less than two years to come into full compliance with regulations that may well change over the coming months, making compliance a moving target. Learn the history of our privacy rights and regulations. And preview the privacy debates and dilemmas that await our digital society.

Confidentiality↗
PubMed1990

Australian standards for privacy and confidentiality of health records in research: implications of the Commonwealth Privacy Act.

The current Australian legal, administrative and professional standards for individual rights to confidentiality and privacy of health records are examined and guidance is offered for the use of personal information in research. The implications of recently introduced privacy legislation for the conduct of research in Australia are discussed. Acquired immunodeficiency syndrome (AIDS) is cited as an example of the complex issues which face researchers and administrative bodies in balancing the privacy rights of individuals and the broader public interest.

Acquired Immunodeficiency Syndrome↗
PubMed2002

AIDS and privacy groups criticize proposed changes to federal privacy rule.

Privacy advocates blast the Bush administration's proposed changes to the 1996 Health Insurance Portability and Accountability Act and say the changes undermine some of the privacy rule's most important strengths, including the consent requirement prior to disclosures about private medical information. The American Hospital Association counters that the proposed changes will save money, cut bureaucracy and paperwork, and still provide adequate privacy protections.

Acquired Immunodeficiency Syndrome↗
PubMed2002

The proposed changes to the final privacy rule suggest a disturbing reduction in an individual's ability to exercise a right to healthcare privacy.

The author contends that, in eliminating HIPAA's mandatory consent requirement, which is the initial step in the patient's Patient Consent exercise of the right to health information privacy, DHHS has turned its back on privacy protection. She posits that the proposed change is the result of a disturbing focus on an elimination of the industry's administrative burdens, rather than on the protection of patient healthcare information. The article concludes that elimination of the consent requirement is a step backwards in the arena of personal privacy.

Access to Information↗