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PubMed1998

Workplace privacy: HIV testing, disclosure, and discrimination.

Human immunodeficiency virus (HIV) testing and the disclosure of HIV-related information pose questions of privacy and public policy that are of concern in both public- and private-sector workplaces. Public-sector employees have constitutional protection from discrimination on the basis of their HIV-positive status. The Americans with Disabilities Act (ADA) is an important source of protection for private-sector employees. There are also other federal laws that provide protection from discrimination. However, the scope of these laws is unclear. Similarly, while some state legislatures have attempted to set standards to protect the privacy of HIV-positive employees, laws vary from state to state. Case precedent is also inconsistent. This article examines some current issues regarding HIV testing, employee privacy, and protection from discrimination.

AIDS Serodiagnosis↗

PubMed1999

Standards for privacy of individually identifiable health information. Office of the Assistant Secretary for Planning and Evaluation, DHHS. Proposed rule.

This rule proposes standards to protect the privacy of individually identifiable health information maintained or transmitted in connection with certain administrative and financial transactions. The rules proposed below, which would apply to health plans, health care clearinghouses, and certain health care providers, propose standards with respect to the rights individuals who are the subject of this information should have, procedures for the exercise of those rights, and the authorized and required uses and disclosures of this information. The use of these standards would improve the efficiency and effectiveness of public and private health programs and health care services by providing enhanced protections for individually identifiable health information. These protections would begin to address growing public concerns that advances in electronic technology in the health care industry are resulting, or may result, in a substantial erosion of the privacy surrounding individually identifiable health information maintained by health care providers, health plans and their administrative contractors. This rule would implement the privacy requirements of the Administrative Simplification subtitle of the Health Insurance Portability and Accountability Act of 1996.

Confidentiality↗

PubMed2000

Security measures required for HIPAA privacy.

HIPAA security requirements include administrative, physical, and technical services and mechanisms to safeguard confidentiality, availability, and integrity of health information. Security measures, however, must be implemented in the context of an organization's privacy policies. Because HIPAA's proposed privacy rules are flexible and scalable to account for the nature of each organization's business, size, and resources, each organization will be determining its own privacy policies within the context of the HIPAA requirements and its security capabilities. Security measures cannot be implemented in a vacuum.

Computer Security↗

PubMed2000

What the publisher can teach the patient: intellectual property and privacy in an era of trusted privication.

This article begins with a premise that intellectual property and privacy have something significant and yet understated in common: both are about balancing a creator's desire to control a particular set of data with consumers' desires to access and redistribute that data. Both law and technology influence such balancing, making it more or less palatable to use data for particular purposes--whether one is an individual making a copy of a popular song for a friend, or a hospital selling a list of maternity ward patients to a day care service. In the shadow of the Internet's rapid development and concomitant easing of barriers to data sharing, holders of intellectual property are pairing increased legal protection with the technologies of "trusted systems." I describe how these technologies might allow more thorough mass distribution of data, while allowing publishers to retain unprecedented control over their wares. For instance, an e-Book seller might charge one price for a read-only copy that could not be printed or forwarded and charge an additional fee for each copy or printout made. Taking up the case of medical privacy, I then suggest that those who worry about the confidentiality of medical records, particularly as they are digitized by recent congressional mandate, might seek to augment comparatively paltry legal protections with trusted systems technologies. For instance, a trusted system could allow a patient to specify how and by whom her records could be used; within limits, she could allow full access to her primary care physician, while allowing only time-limited access to emergency care providers, non-personally identifiable access to medical researchers, and no access at all for marketing purposes. These technologies could allow for new kinds of privacy protection, without sacrificing the legitimate interests of the consumers of medical records.

Humans↗

PubMed2000

Standards for privacy of individually identifiable health information. Office of the Assistant Secretary for Planning and Evaluation, DHHS. Final rule.

This rule includes standards to protect the privacy of individually identifiable health information. The rules below, which apply to health plans, health care clearinghouses, and certain health care providers, present standards with respect to the rights of individuals who are the subjects of this information, procedures for the exercise of those rights, and the authorized and required uses and disclosures of this information. The use of these standards will improve the efficiency and effectiveness of public and private health programs and health care services by providing enhanced protections for individually identifiable health information. These protections will begin to address growing public concerns that advances in electronic technology and evolution in the health care industry are resulting, or may result in, a substantial erosion of the privacy surrounding individually identifiable health information maintained by health care providers, health plans and their administrative contractors. This rule implements the privacy requirements of the Administrative Simplification subtitle of the Health Insurance Portability and Accountability Act of 1996.

Confidentiality↗

PubMedDate not supplied

[The new frontier of the right to privacy].

From the right to privacy there derives a right to genetic privacy to protect individuals from some of the potential threats that may arise with respect to advances in Biology. Here we look at the basis for the proposed concept of the right to genetic privacy and examine issues concerning the legal nature, the active and passive subjects, the limitations and guarantees of this right.

Genetic Privacy↗

PubMedDate not supplied

[Nursing care and the invasion of the patient's privacy: an ethical-moral question].

Nurses constantly invade patients' intimacy and privacy when delivering nursing care; however, they rarely discuss the aspects involving such issue. Nursing literature on this theme is scarce, which has motivated the development of this study with the purpose to sensitize nurses as to the relevance of and need for reflection on this matter. Ethical, legal and moral questions that permeate the invasion of privacy are pointed out, thus showing the responsibilities of nursing professionals. The actions of Committees of Ethics in Research as well as those of Nursing Ethics Committees in Organizations are discussed as mechanisms for the control and protection of individuals, mainly approaching the conduct and attitudes of nurses in the care-giving process. This study emphasizes the need for discussions and reevaluations of the roles of such mechanisms and of the quality in nursing care, since protection to patients' privacy is still deficient.

Ethics, Nursing↗

PubMedDate not supplied

HIPAA privacy regulations clarified: let calm prevail.

The Health Insurance Portability and Accountability Act (HIPAA) privacy regulations are now in full effect. Enforcement regulations have been published. Physicians, like other Covered Entities, must come to grips with the practical applications and implications of the regulations in their day-to-day practice operations. Despite reams of prefatory guidance from the Department of Health and Human Services (HHS) and additional guidance from its Office for Civil Rights (OCR) in the form of responses to Frequently Asked Questions, the regulations leave much to interpretation (see http://www.hhs.gov/ocr/index.html). Many attorneys and consultants have raised general alarms about the dire complexity and impact of the privacy rules. These are unnecessary hysterics. Fortunately, for physician practices, most privacy issues can be dealt with by adopting appropriate common sense policies and procedures. This article identifies some common conundrums and issues physician practices are likely to encounter in implementing the regulations and offers practical guidance for addressing them.

Health Insurance Portability and Accountability Ac↗

PubMed2003

They're real and they're here: the new federally regulated privacy rules under HIPAA.

The purpose of the HIPAA Privacy Rules was to create national standards to protect the privacy of personal health information. As of April 14, 2003, all covered health care entities must comply with the newly implemented national standards. The importance of staying updated with the law, while particularly important for the patient's privacy, is just as important for the nurse to avoid civil punitive damages and possible criminal charges.

Confidentiality↗

PubMed2002

Patient privacy: how far is too far?

With few exceptions, personal privacy has long been an ethical right and legal mandate. Clinicians, policy makers, and consumers are challenged to find a balance between allowing consumers to be protected and allowing clinicians to meet patient care needs. This article examines the current debate pertaining to new Medical Privacy Guidelines that were issued in April 2001. The ethical principle of patient confidentiality, including the right to personal privacy, is reviewed along with its relationship to computer-generated wound care tracking programs that transcend practice settings. Options for Health Insurance Portability and Accountability Act (HIPAA) compliance are presented.

Computer Security↗

PubMedDate not supplied

Icelandic. Decision of the Supreme Court on the protection of privacy with regard to the processing of Health Sector Databases. Attorney at Law vs The State of Iceland.

Mr. R appealed for a decision by the Court to overturn the refusal of the Medical Director of Health to her request that health information in medical records pertaining to herdeceased father should not be entered into the Health Sector Database. Furthermore, she called for recognition of her right to prohibit the transfer of such information into a database. Article 8 of Act No 139/1998 on a Health Sector Database provides for the right of patients to refuse permission, by notification to the Medical Director of Health, for information concerning them to be entered into the Health Sector Database. The Court concluded that R could not exercise this right acting as a substitute of her deceased father, but it was recognised that she might, on the basis of her right to protection of privacy, have an interest in preventing the transfer of health data concerning her father into the database, as information could be inferred from such data relating to the hereditary characteristics of her father which might also apply to herself. It was revealed in the course of proceedings that extensive information concerning people's health is entered into medical records, e.g. medical treatment, life-style and social conditions, employment and family circumstances, together with a detailed identification of the person that the information concerns. It was recognised as unequivocal that the provisions of Paragraph 1 of Article 71 of the Constitution applied to such information and guaranteed to every person the right to protection of privacy in this respect. The Court concluded that the opinion of the District Court, which, inter alia, was based on the opinion of an assessor, to the effect that so-called one-way encryption could be carried out in such a secure manner that it would be virtually impossible to read the encrypted data, had not been refuted. It was noted, however, that Act No. 139/1998 provides no details as to what information from medical records is required to be encrypted in this manner prior to transfer into the database or whether certain information contained in the medical records will not be transferred into the database. The documents of the case indicate that only the identity number of the patient would be encrypted in the database, and that names, both those of the patient and his relatives, as well as the precise address, would be omitted. It is obvious that information on these items is not the only information appearing in the medical records which could, in certain cases, unequivocally identify the person concerned. Act No. 139/1998 also provides for authorisation to the licensee to process information from the medical records transferred into the database. The Act stipulates that certain specified public entities must approve procedures and process methods and monitor all queries and processing of information in the database. However, there is no clear definition of what type of queries will be directed to the database or in what form the replies to such queries will appear. The Court concluded that even though individual provisions of Act No 139/1998 repeatedly stipulate that health information in the Health Sector Database should be non-personally identifiable, it is far from adequately ensured under statutory law that this stated objective will be achieved. In light of the obligations imposed on the legislature by Paragraph 1 of Article 71 of the Constitution, the Court concluded that various forms of monitoring of the creation and, operation of the database are no substitute in this respect without foundation in definite statutory norms. In light of these circumstances, and taking into account the principles of Icelandic law concerning the confidentiality and protection of privacy, the Court concluded that the right of R in this matter must be recognised, and her court claims, therefore, upheld.

Databases, Factual↗

PubMed2005

Blood rights: the body and information privacy.

Genetic and other medical technology makes blood, human tissue and other bodily samples an immediate and accessible source of comprehensive personal and health information about individuals. Yet, unlike medical records, bodily samples are not subject to effective privacy protection or other regulation to ensure that individuals have rights to control the collection, use and transfer of such samples. This article examines the existing coverage of privacy legislation, arguments in favour of baseline protection for bodily samples as sources of information and possible approaches to new regulation protecting individual privacy rights in bodily samples.

Australia↗

PubMed2005

The medical examination in United States immigration applications: the potential use of genetic testing leads to heightened privacy concerns.

The medical examination has been an integral part of the immigration application process since the passing of the Immigration Act of 1891. Failing the medical examination can result in denial of the application. Over the years the medical examination has been expanded to include questioning about diseases that are scientifically shown to be rooted in an individual's genetic makeup. Recent advances in the fields of genomics and bioinformatics are making accurate and precise screening for these conditions a reality. Government policymakers will soon be faced with decisions regarding whether or not to sanction the use of these newly-developed genetic tests in the immigration application procedure. The terror threat currently facing the United States may ultimately bolster the argument in favor of genetic testing and/or DNA collection of applicants. However, the possibility of a government mandate requiring genetic testing raises a host of ethical issues; including the threat of eugenics and privacy concerns. Genetic testing has the ability to uncover a wealth of sensitive medical information about an individual and currently there are no medical information privacy protections afforded to immigration applicants. This article examines the potential for genetic testing in the immigration application process and the ethical issues surrounding this testing. In particular, this article explores the existing framework of privacy protections afforded to individuals living in the United States and how this and newly-erected standards like those released by the Health and Human Services (HHS) might apply to individuals seeking to immigrate to the United States.

Blood Specimen Collection↗

PubMed1995

Patient privacy in the era of medical computer networks: a new paradigm for a new technology.

For twenty five years the legal system has tried to protect the privacy of identified patient data contained in information systems. The rapid development of such technology has repeatedly frustrated the public policies incorporated into the legal system. However the newest information technologies provide the possibility of fundamentally changing the way information is stored in the health care system and, by "De personalizing the data," allow restoration of a reasonable level of personal privacy, without interfering with the legitimate needs for medical data. The system would require a secure "identifier control facility" and act as a network "file access table" able to reconstruct widely distributed bits of the patients record. A disaggregated "virtual record" would replace the integrated patient file, and the risks to data privacy inherent in the use of names or permanent identification numbers would be eliminated.

Computer Communication Networks↗

PubMedDate not supplied

Update on patient privacy legislation.

The administrative simplification provisions of HIPAA will establish the first national standards for the electronic transmission of health care transactions with which all federal programs (DOD, Medicare, and Medicaid) and all private health plans must comply. Individuals and organizations should prepare themselves, their systems, and their processes to meet these new administrative and financial data standards and requirements. The benefits of standardized electronic transactions on achieving a single paper-free claims submission to be used by all providers and payers is of obvious benefit. Not so obvious are consequences associated with limiting the access and use of existing data repositories on a variety of clinical, administrative, and research functions. It is critically important in this age of increased accountability for fiscal restraint and improving the outcomes of entire patient populations that clinicians, managers, organizations, and researchers to use data for a variety of clinical, quality improvement/evaluation, and research purposes. Administrative simplification and protecting individual privacy should not be achieved by overly bureaucratic and restrictive responses that impede epidemiologic and health services research, quality improvement activities, and optimization strategies for improving the health of populations. While the health system understands the need for some increased regulation to ensure the privacy of individual patient privacy in the "wired" world solutions must be found and overly restrictive consequences associated with prohibiting access to data must be resolved. More than ever, the entire system requires data to inform every level and type of decision made. Legislation and bureaucratic processes that do not understand and support responsible data-driven decision-making will serve to roll-back, not advance health system improvement. As we prepare ourselves for HIPAA compliance and the expectations of the benefits it will achieve, we must wait to see what impact it will have on clinical, administrative, and research functions concerned with improvement.

Computer Security↗

PubMed1998

Maintaining confidentiality and privacy in case study presentations: implications for wound care education.

Wound care professionals are often called upon to prepare others to care for patients with chronic and other forms of skin injury. Case presentations offer a creative and meaningful approach in teaching assessment and treatment options. However, case presentations pose threats to patient confidentiality and privacy. Using a clinical situation, confidentiality and privacy issues that can arise from these case presentations are briefly described and recommendations are provided to enable clinicians to avoid situations that violate the patient's privacy.

Confidentiality↗

PubMed2004

Research subject privacy protection in otolaryngology.

BACKGROUND: Health Insurance Portability and Accountability Act regulations, which took effect on April 14, 2003, placed new constraints on the use of protected health information for research purposes. OBJECTIVE: To review practices of research subject privacy protection in otolaryngology in order to determine steps necessary to achieve compliance with Health Insurance Portability and Accountability Act regulations. STUDY DESIGN: Literature review. METHODS: Articles appearing in 2001 in 3 widely circulated otolaryngology journals were classified according to study design. The "Methods" section of each article was reviewed to determine whether the informed consent and institutional review board processes were clearly documented. RESULTS: Descriptive studies involving case reports and case series were more common than observational studies that include a control group (66% vs 11%). Few case series documented the consent process (18%) and institutional review board process (19%). Observational designs demonstrated better documentation of the consent process (P<.001) and the institutional review board exemption and approval process (P<.001). CONCLUSIONS: Methods used to protect subject privacy are not commonly documented in case series in otolaryngology. More attention needs to be given to research subject privacy concerns in the otolaryngology literature in order to comply with Health Insurance Portability and Accountability Act regulations.

Confidentiality↗

PubMed1996

Notification of a family history of breast cancer: issues of privacy and confidentiality.

Little information is available about notifying individuals with a family history of cancer about their risk of cancer. With the recent identification of BRCA1, an important predisposition gene for breast and ovarian cancer, genetic testing is becoming available to high-risk women and their families. Some of these individuals, may not be aware of their family history and may be notified of their family history by medical personnel or biomedical investigators. This disclosure could be detrimental to the individual by changing their perception of risk, sense of privacy, or psychosocial well-being. Members of 544 breast cancer families are currently being contacted as part of an epidemiologic follow-up study at the University of Minnesota. Some family members were unaware of their relative's diagnosis and therefore, notification occurred when they were contacted by study personnel. To determine the impact of risk notification in this context, 376 male and female relatives of 160 breast cancer probands were surveyed to assess their prior knowledge of their family history of cancer, issues relating to study participation, and their concerns regarding the possibility of developing cancer. Following a telephone interview about family history, family members were administered a short, open-ended questionnaire. The majority of individuals (82%) were blood relatives of the proband and 71% were either first- or second-degree relatives. A proportion of blood relatives (24%) were not aware of their family history of breast cancer. More blood relatives (76%) than nonblood relatives (62%, P < 0.01) were aware of their family history. 43 respondents (12%) expressed specific concerns about participating in the large genetic follow-up study and 16 comments concerned privacy issues. Neither the reasons for participation nor an individual's concern about developing cancer was associated with gender of the respondent, relationship to the proband, or awareness of breast cancer in the family. Interestingly, individuals who were notified about their family history through the large follow-up study were no more likely than other family members to be more concerned about developing cancer. Understanding the privacy and psychosocial issues of family members who are informed about a family history of breast cancer may aid in developing appropriate guidelines for notification. Risk notification in this setting does not appear to have a significant impact on these family members.

Breast Neoplasms↗