Medical privacy and the disclosure of personal medical information: The beliefs and experiences of those with genetic and other clinical conditions

The article discusses a number of issues associated with medical privacy in psychiatry, including forensic psychiatric evaluation. Current Law of the Russian Federation “On Psychiatric Care and Guarantees of Citizens’ Rights in Its Provision” requires taking into account the mental state of a person with a mental disorder when informing him about his mental health condition. However this rule misses new realities of digital health and is not included into the legislation on protection of citizens’ health. It is hardly possible to realize in practice and it needs an additional and established by law mechanism of access to medical records, considering specific properties of psychiatric patients. Problems also arise with a mentally disordered person's access to his forensic psychiatric medical record. On the one hand, the report of forensic psychiatric evaluation is an evidence in the court case, and the procedure for its disclosure is regulated by procedural legislation and legislation on state forensic expert activities. On the other hand, the Constitutional Court of the Russian Federation considers such a report as a medical document, for which the rules of legislation on protection of citizens’ health apply. In this paper the authors propose the solution to this dilemma that requires corrections in the position of the Constitutional Court of the Russian Federation. The authors analyze the history of legislation on medical privacy and draw attention to obvious long-term trend that shows in continuing expansion of the range of persons who have right to access such information without consent of the citizen concerned. The authors conclude that medical privacy is gradually losing the nature of the right guaranteed by federal law. Especially worrying are the attempts of a number of state bodies and officials to obtain information about mental health of unspecified groups of people. Too many third parties already have access to medical information for various reasons, and the number is growing with introduction of digital health information systems. The authors come to conclusion that such a development can lead to serious negative consequences for the legally guaranteed rights of citizens and stress the importance of special attention to protection of medical information, including measures against unlawful access and possible leaks.

Download Full-text

Privacy and Integrity of Medical Information

The Oxford Handbook of Comparative Health Law ◽

10.1093/oxfordhb/9780190846756.013.8 ◽

2020 ◽

Author(s):

Sharona Hoffman ◽

Jean Herveg

Keyword(s):

United States ◽

Healthcare System ◽

Medical Information ◽

Personal Autonomy ◽

The United States ◽

Self Determination ◽

Human Beings ◽

Policy Makers ◽

Appropriate Treatment ◽

Medical Privacy

This chapter explores contemporary regulation of medical privacy in the United States and Europe and its challenges. The need for privacy is a fundamental human necessity. Privacy relates to human beings’ ability to maintain their dignity and avoid disclosure of information that might be deemed unpleasant. It is also associated with personal autonomy and informational self-determination. At the same time, however, some degree of data sharing is essential to the appropriate treatment of patients as well as to the proper functioning of society in general and the healthcare system in particular. Thus, privacy cannot be limitless. Hence, this chapter discusses regulatory strengths and shortcomings and highlights gaps in the law. It also suggests further safeguards that policy-makers should implement in order to protect patients and data subjects.

Download Full-text

Attitudes of Patients and Their Families Towards Medical Privacy and Competence of Bearer or Receiver of Bad News

International Journal of Medical Toxicology and Forensic Medicine ◽

10.32598/ijmtfm.v10i4.28580 ◽

2020 ◽

Vol 10 (4) ◽

pp. 28580.1-28580.9

Author(s):

Maryam Zaare Nahand ◽

◽

Mohammad Asghari Jafarabadi ◽

Mehrnoosh Haghighatjou ◽

Kosar Ashrafrezaei ◽

...

Keyword(s):

Medical Information ◽

Medical Center ◽

Cross Sectional Study ◽

Bad News ◽

Privacy Rights ◽

Model Quality ◽

Cross Sectional ◽

Significance Level ◽

Bartlett Test ◽

Medical Privacy

Background: Based on the patients’ and relatives’ views on the level of preservation of privacy rights of individuals, we propose a way to reduce problems and disagreements about the competence of the provider and recipient of bad news. Methods: In the current cross-sectional study, the participants were recruited from the main northwest hospital of Iran. It was also conducted to study the scope of medical privacy and competence of bearers or receivers of bad news. After the literature review, two questionnaires were designed and administered. They contained items pertinent to the scope of medical privacy and competence of bearers and receivers of bad news. Each item of the original questionnaire was scored on a 5-point Likert scale. Results: The model quality and significance level were obtained using KMO and Bartlett tests. The results (patient’s attitudes questionnaire: KMO=0729 and P<0.05 in the Bartlett test; family attitudes questionnaire: KMO=0.764 and P<0.05 in the Bartlett test) confirmed the model efficiency. According to the results from factor variance and their cumulative rate, the predictive power of the model was obtained as 62.019%, based on the overall factor variance rate. The majority of patients wanted to be informed about their disease conditions. They also considered bad news to be medical privacy and disagreed that their medical information should be opened up with others without permission. Conclusion: To preserve medical privacy, it is recommended that a system be designed that allows patients at the admission to the medical center to enlist their eligible family members to whom medical information can be delivered.

Download Full-text

Use and Disclosure of Health Information in Genetic Research: Weighing the Impact of the New Federal Medical Privacy Rule

American Journal of Law & Medicine ◽

10.1017/s0098858800011680 ◽

2002 ◽

Vol 28 (2-3) ◽

pp. 309-324

Author(s):

Jennifer Kulynych ◽

David Korn

Keyword(s):

Health Policy ◽

England Journal ◽

New England ◽

Medical Records ◽

Medical Information ◽

Genetic Research ◽

Policy Issues ◽

The Impact ◽

Medical Privacy ◽

Intense Emotion

Perceived threats to medical privacy arouse intense emotion, even among those who might otherwise approach complex health policy issues with academic dispassion. The author of an August 2001 editorial in the New England Journal of Medicine describes medical records as “sacred secrets,” and decries the use of medical information for purposes unrelated to patient care as “an abridgement of individual rights” and “an unfolding American tragedy.

Download Full-text

Medical Privacy and the National Health Information Network Initiative

Encyclopedia of Healthcare Information Systems ◽

10.4018/978-1-59904-889-5.ch108 ◽

2008 ◽

pp. 866-872

Author(s):

Edward J. Szewczak

Keyword(s):

Health Information ◽

National Health ◽

Radio Frequency Identification ◽

Medical Information ◽

The United States ◽

Medical Data ◽

Information Network ◽

Medical Histories ◽

The Individual ◽

Medical Privacy

Traditionally medical data were typically collected and stored as records in physician’s offices and in hospitals. Often the data were recorded manually and retrieved manually. Today collection and retrieval of medical data is increasingly done using information technology (IT). The introduction of IT, especially e-technologies, has changed the handling of medical data in ways that are both promising for improving health care as well as threatening to the individual patient’s medical privacy. This article will examine medical privacy and the National Health Information Network (Kaushal, et al., 2005) initiative. Other technologies such as Radio Frequency Identification Device (RFID), voice over IP (VOIP) and telemedicine, while relevant to the topic of medical privacy and IT, are tangential to the more central issues of electronic health records, medical databases, and the development of a national health information network. Although the focus will be on medical privacy in the United States of America, it is evident that people in other countries are also concerned about their medical privacy. Singaporeans, especially Malays, worry that their medical histories may result in racial discrimination. In the area of medical research, the Chinese and Indians want their medical information confined only to the area of study that was originally agreed to and not disseminated widely (Tan, 2006).

Download Full-text

Fifth Edition: the New Standard

Guides Newsletter ◽

10.1001/amaguidesnewsletters.2000.novdec01 ◽

2000 ◽

Vol 5 (6) ◽

pp. 1-7

Author(s):

Christopher R. Brigham ◽

James B. Talmage ◽

Leon H. Ensalada

Keyword(s):

Musculoskeletal System ◽

Medical Information ◽

Objective Assessment ◽

Scientific Data ◽

Practical Application ◽

Fourth Edition ◽

Appropriate Use ◽

Medical Evaluation ◽

Single Set

Abstract The AMA Guides to the Evaluation of Permanent Impairment (AMA Guides), Fifth Edition, is available and includes numerous changes that will affect both evaluators who and systems that use the AMA Guides. The Fifth Edition is nearly twice the size of its predecessor (613 pages vs 339 pages) and contains three additional chapters (the musculoskeletal system now is split into three chapters and the cardiovascular system into two). Table 1 shows how chapters in the Fifth Edition were reorganized from the Fourth Edition. In addition, each of the chapters is presented in a consistent format, as shown in Table 2. This article and subsequent issues of The Guides Newsletter will examine these changes, and the present discussion focuses on major revisions, particularly those in the first two chapters. (See Table 3 for a summary of the revisions to the musculoskeletal and pain chapters.) Chapter 1, Philosophy, Purpose, and Appropriate Use of the AMA Guides, emphasizes objective assessment necessitating a medical evaluation. Most impairment percentages in the Fifth Edition are unchanged from the Fourth because the majority of ratings currently are accepted, there is limited scientific data to support changes, and ratings should not be changed arbitrarily. Chapter 2, Practical Application of the AMA Guides, describes how to use the AMA Guides for consistent and reliable acquisition, analysis, communication, and utilization of medical information through a single set of standards.

Download Full-text