Public trust and privacy in shared electronic health records

The development of information and communication technology in health care, also called eHealth, is expected to improve patient safety and facilitate more efficient use of limited resources. The introduction of electronic health records (EHRs) can make possible immediate, even automatic transfer of patient data, for health care as well as other purposes, across any kind of institutional, regional or national border. Data can thus be shared and used more effectively for quality assurance, disease surveillance, public health monitoring and research. eHealth may also facilitate patient access to health information and medical treatment, and is seen as an effective tool for patient empowerment. At the same time, eHealth solutions may jeopardize both patient safety and patients' rights, unless carefully designed and used with discretion. The success of EHR systems will depend on public trust in their compatibility with fundamental rights, such as privacy and confidentiality. Shared European EHR systems require interoperability not only with regard to technological and semantic standards, but also concerning legal, social and cultural aspects. Since the area of privacy and medical confidentiality is far from harmonized across Europe, we are faced with a diversity that will make fully shared EHR systems a considerable challenge.     

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.     

Justice and intergenerational relations: An introduction

Gerontologists have rarely considered the concept of social justice in their research. Instead, related but more specific questions about the social situation of the aged have been posed. This paper provides an overview of existing social psychological literature on justice and intergenerational relations as a context for the five other papers contained in this issue. The importance of intergenerational justice within the family, particularly when there is a caretaking relationship, is stressed. As well, the policy implications of a concern with intergenerational justice are considered. The Paper concludes with a recommendation that gerontology and social justice research be integrated more frequently in order to enrich both fields of study.     

Post-mortem human reproduction: legal and other regulatory issues

Increasingly women are seeking to establish pregnancies using sperm retrieved from their dead or dying partners. This raises a number of issues of a broad nature, but is also of significance in terms of the relationship between regulatory mechanisms and private choices. This article reviews this relationship with specific reference to the United Kingdom position, but also taking account of case law and regulation in Australia, particularly in the State of Victoria.     

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.     

Prescribing privacy: the uncertain role of the physician in the protection of patient privacy

Because medical records are now more comprehensive than ever before, they increasingly are being demanded for uses both inside and outside of the medical profession. Mr. Gellman contends that existing ethical and legal guidance is inadequate to aid physicians in dealing with the confidentiality issues raised when patient information is requested or demanded from them, and supports this contention by examining the dilemmas faced by physicians presented with such requests or demands. He concludes that ethical and judicial guidance will continue to be inadequate, and that the only practical way to develop suitable guidance is through legislation.     

Post-mortem protection and domain name use

Personality rights cannot be exercised, as far as a commercialexploitation of a person's name is concerned, after 10 yearsfrom the death of the person.     

Post-mortem cooling of the human head: an infrared thermology study

The post-mortem cooling of the human head, over the first fifteen hours after death, was measured by infrared thermology. A detailed temperature map of the head and face was obtained by the use of image processing techniques and the cooling behaviour of twelve preselected facial features was observed. The two main findings of the study were a difference in cooling pattern between the upper and the lower part of the head, and a consistency in the cooling pattern of the lower part of the head in all the cases studied. A comparison of various model fits to the raw data was undertaken and the "best" bodies, models and features were determined on a statistical basis. The formula that best fitted the raw data was a novel double application of Newton's law. The features with the least error in data fitting were the chin and zygoma; that with the most error was the mouth.     

HIPAA privacy: the compliance challenges ahead

This Article reviews the HIPAA Privacy Standards' impact on healthcare organizations. It discusses whether a healthcare organization is a "Covered Entity" under the regulations, what information the Privacy Standards protect, what restrictions the regulations place on the use and disclosure of protected health information, what individual rights the Privacy Standards create, and what agreements they require between healthcare organizations and their business associates. The author provides relatively extensive guidance to organizations that are embarking upon their voyage of compliance with these broadly applicable regulations, but notes that the full extent of necessary compliance remains unclear, pending DHHS issuance of the next iteration of the rulemaking in this area. The Article was finalized in January 2002, before HHS issued any modifications to the Privacy Standards.     

Polygraphs: Erosion of the privacy right

The polygraph is a machine which invades previously private regions in the human being. Its operation is often viewed simplistically and lacking in danger. Such naivete is the subject of this comment. The paper considers the mechanics of polygraph operation, and its theoretical basis; the legal admissibility of the polygraph in a variety of settings, and lastly the impact the polygraph has upon our private lives.Clearly, the polygraph intrudes on the private regions of each individual, and this frightening fact is cause enough to consider the human, social and constitutional implications of its use. The project considers the reliability factor of the polygraph and its questionable use in personnel and business settings; its use in disciplinary procedures and labor arbitration, as well as reviews its place in judicial process and criminal review.Most critically the paper attempts to arrive at a constitutional basis for restrictions on its use in the private sector. Ingenious arguments have been made by opponents of the polygraph, and this paper reviews the substance and content of these constitutional arguments.     

Post-mortem changes of the middle ear: multislice computed tomography study

Six dry skulls were studied by multislice computed tomography (MSCT). They had not previously been prepared, and were natural skeletonized remains. All had been found in the soil. Examination focused on the temporal bones and the ear structures. In all cases, either disruption of the ossicular chain or absence of some ossicular bones were noted. The authors concluded that the fragile ossicles were disrupted in the post-mortem state, and were not indicative of ante-mortem pathology. These observations illustrate the ability of MSCT to visualize taphonomic changes. To further illustrate these findings, we present the results of MSCT performed on an exhumed body. The left ossicular bones were missing and the right ossicular chain was disrupted. With the development of forensic radiology, structures as tiny as the ossicles can be examined. However, the radiologist who performs post-mortem imaging must be familiar with taphonomic changes to avoid interpretation as ante-mortem or peri-mortem traumatic injuries. This could potentially have considerable judicial impact, especially in the study of exhumed bodies.     

Bioterrorism meets privacy: an analysis of the Model State Emergency Health Powers Act and the HIPAA privacy rule

Ms. Bruce's paper analyzes the interplay between the Model State Emergency Health Powers Act and the HIPAA Privacy Rule. The article begins by examining specific relevant provisions of the Act and Rule. Next, it traces the history of public health law through the court system and then uses this foundation to discuss how the Model State Emergency Health Powers Act and the HIPAA Privacy Rule could co-exist, protecting Americans in the case of a bioterror attack, while being appropriately sensitive to the confidentiality of private health information.     

HealthConnect and privacy: a policy conundrum

A shared electronic health record is intrinsically privacy-invasive because it creates a comprehensive record for information-sharing. The author explains the significance of information privacy and why it is that health information warrants special protection. She also provides an overview of the existing regulatory framework and an evaluation of suggested options and proposals for addressing privacy-related issues. Her analysis of suggested consent models suggests that they ultimately involve a trade-off between privacy and the broader benefits promised by HealthConnect and that obtaining the right balance is essential if HealthConnect is to achieve optimal health outcomes.