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Author notes that widespread concerns have been raised about protecting genetic privacy and confidentiality in insurance and employment. He argues that effective protections are difficult because complicated issues, such as the right of access to health care, are invariably implicated.
Individual privacy rights are considered in the context of our increasingly computerized society. Guidelines for the maintenance of confidentiality of health care records are reviewed, and the provisions of four bills under consideration by Congress are examined. The dangers of legislation that authorizes government access to mental health treatment data are underlined, and preventive action on the part of mental health professionals is urged.
Personal medical information is now bought and sold on the open market. Companies use it to make hiring and firing decisions and to identify customers for new products. The justification for providing such access to medical information is that doing so benefits the public by securing public safety, controlling costs, and supporting medical research. And individuals have supposedly consented to it. But we can achieve the common goods while better protecting privacy by making institutional changes in the way information is maintained and protected.
Privacy incursions in the clinical care of substance abusing pregnant women have gained lay and professional attention recently as the result of a high-profile Supreme Court finding in Ferguson vs City of Charleston et al. In March, 2001 the Supreme Court determined that nonconsensual drug screening of pregnant women by clinicians in a public hospital violated the women's Fourth Amendment rights to be secure against unreasonable search and seizure. Coercive or punitive policy approaches to perinatal substance abuse are often based on mistaken assumptions about the nature of addiction and the outcomes of punitive interventions. Much attention has been given to efforts to criminalize pregnancy for drug using women, and civil laws are also coming under increasing scrutiny. Although no state has passed a law criminalizing pregnancy and drug use, an estimated 250 women in more than 30 states have been prosecuted around the country on theories of "fetal abuse." A growing number of states (eighteen to date) have amended their civil child welfare laws to address specifically the subject of a woman's drug use during pregnancy. No one has examined how these laws and social policies could affect research that includes pregnant and parenting women; women (and their families) who stand to lose a great deal should their drug use be brought to the attention of child welfare or criminal justice authorities. We examine the adequacy of current protective mechanisms, such as federal certificates of confidentiality, in protecting research subjects (and investigators) who may be subject to punitive civil or criminal sanctions. We determine that current protective mechanisms may be insufficient to protect research subjects and that investigators and IRB members are often ignorant of the risks imposed by punitive policy approaches to perinatal substance abuse or fall prey to the same mistaken assumptions that inform punitive policies. We conclude that investigators and IRB members have a moral responsibility to understand local, state and national policies and laws governing perinatal substance abuse. Investigators and IRB members should balance the harms of punitive interventions against the protections that may, or may not be afforded to prospective research subjects as well as the prospective benefits, individual and social, of the research. In situations where criminal or punitive policies are in effect, investigators and IRB members should consider whether adequate protections can be achieved. In the context of inadequate protections, potential risks to prospective research subjects and their families may outweigh the individual or social benefits that accrue from the research. Clinical researchers are professionally obligated to work toward amending laws and policies that are not in the best interests of prospective research subjects.
This paper discusses the challenges associated with privacy in health care in the electronic information age based on the Health Insurance Portability and Accountability Act (HIPAA) and the Security Rules. We examine the storing and transmission of sensitive patient data in the modem health care system and discuss current security practices that health care providers institute to comply with HIPAA Security Rule regulations. Based on our research results, we address current outstanding issues that act as impediments to the successful implementation of security measures and conclude the discussion and offer possible avenues of future research.
The lack of single-bed rooms in psychiatric wards may reduce the possibility of patients getting sufficient rest and privacy and may increase their risk of being overstimulated. This study explored whether residing in single- versus multiple-bed rooms in a psychiatric ward was associated with psychiatric patients' opinions about seclusion. More specifically, it was studied whether patients who had shared a room with other patients prior to seclusion rated seclusion more favorably. It was thought that they would rate seclusion more favorably due to the lack of rest they previously experienced in their regular room. For this, the Patient View-of-Seclusion Questionnaire of Hammill, McEvoy, Koral, and Schneider [Hammill, K., McEvoy, J., Koral, H., & Schneider, N. (1989). Hospitalized schizophrenic patient views about seclusion. Journal of Clinical Psychiatry, 50, 174-177] was completed by 54 secluded adult patients hospitalized in a locked ward of a Dutch psychiatric hospital. A significant association was found between residing in multiple-bed rooms prior to seclusion and a less negative view on seclusion. This finding suggests that the ward environment may have a rather large impact on how seclusion is perceived. The results underline the need for single-bed rooms in the treatment of psychiatric inpatients.
PURPOSE: From the Hippocratic Oath to the World Medical Association's Declaration of Geneva, physicians have sworn to protect patients' privacy. However, as systems move to more integrated architectures, protecting this medical data becomes more of a challenge. The increase in complexity of IT environments, the aggregation of data, and the desire of other entities to access this data, often 24 h/day x 7 day/week x 365 day/year, is putting serious strains on our ability to maintain its security. This problem cuts across all electronic record sources from patient care records to academic medical research records. APPROACH: In order to address this issue, we are rethinking the way we store, transmit, process, access, and federate patient data from clinical and research applications. Our groups at the University of Michigan are developing a system called the "Honest Broker" to help manage this problem. The Honest Broker will offload the burden of housing identifiable data elements of protected health information (PHI) (e.g., name and address) as well as manage data transfer between clinical and research systems. Lab results and other non-identifiable data will be stored in separate systems with either a research study ID or clinical ID number. This two-component architecture increases the burden on attackers who now need to compromise two systems, one of which is seriously hardened, in order to match health data with a patient's actual identity. CONCLUSIONS: While no security system is truly intrusion-proof, this architecture provides a high security choke point reducing the likelihood of a breach. By redesigning the method of integrating clinical care and research, we have enabled projects that would be cost prohibitive to conduct otherwise. The scalability of this mechanism is dependant on nature of the heterogenous nature of the clinical systems serving patients.
When combined with medical information, large electronic databases of information that identify individuals provide superlative resources for genetic, epidemiology and other biomedical research. Such research resources increasingly need to balance the protection of privacy and confidentiality with the promotion of research. Models that do not allow the use of such individual-identifying information constrain research; models that involve commercial interests raise concerns about what type of access is acceptable. Researchers, individuals representing the public interest and those developing regulatory guidelines must be involved in an ongoing dialogue to identify practical models.
State laws and accreditation requirements dictate the form, ownership, and substance of medical records, as well as requirements for storage, access, and confidentiality. There are limited exceptions to these requirements but they are highly circumscribed. Federal law also outlines requirements to ensure the privacy of patient-identifiable information. Thus, providers must be aware of these rules both to protect patient information from being abused and to understand the affirmative obligations they have so as to avoid the significant penalties associated with breach of these provisions.
DNA gathered from a used coffee mug could lead to serious breaches of a person's genetic privacy. The UK government's Human Genetics Commission now recommends making theft of genetic information a criminal offence, writes Michael Gross.
Several adult male members of a sadomasochistic sex club were arrested for violating a U.K. statute passed in 1861--The Offences Against the Person Act. The sex acts spanned a 10-year period and were videotaped. They involved manipulation of the genitalia with hot wax, sand paper, fish hooks, and needles. The sexual interactions were consensual. This analysis tracks the case from trial, to the Court of Appeal, to the House of Lords, and on to the European Court of Human Rights. It examines whether or not these sexual behaviors should be protected under a right to privacy. It contrasts state concerns of bodily harm, albeit consented to, in sex with those incurred in sport.
Recent technical developments in genetic testing has led to a situation where the DNA in previously stored tissue samples can be extracted and used for genetic analysis. This raises the question of how to decide whether a specific use of such samples should be allowed. Using the genetic testing of ancient DNA in general, and the DNA of the pharaoh Tutankhamen in particular as examples this paper analyses the question. It investigates whether ethical frameworks based on proxy consent, cultural affiliation, ownership, or the privacy rights of the dead are appropriate and justifiable in this context. The conclusion is that frameworks based on proxy consent, cultural affiliation, and ownership are not very useful.
What justified the Center for Disease Control's 1999 determination to require HIV case reporting? Why were names necessary? Why did opponents view the reporting of names with such alarm? This paper retells the history of the encounters over HIV reporting that had occurred since the mid 1980s. In placing HIV reporting within a larger context, however, we understand the clash between privacy and public health necessity as a complex issue, both in historical and contemporary practice. By underscoring the similarities and differences with the histories of surveillance for other infectious diseases, vaccination, occupational diseases, cancer, and birth defects, and HIV reporting internationally, we can better understand the implications of the HIV debate for an ethics of surveillance more generally.
AIM: The study aims to illuminate how one woman with severe dementia and so-called behavioural disturbances acts in relation to her care providers and how the care providers act in relation to her. METHODS: Fourteen participant observations, including one woman with dementia and six care providers, were performed. A reflective dialogue focusing on the interaction between the woman and her care providers followed each observation. The tape-recorded observational notes and reflective dialogues were fixed as a text, which was subjected to a thematic content analysis. FINDINGS: The main findings are that the interaction between a woman with severe dementia and "behavioural disturbances" and her care providers relates to privacy, identity, autonomy and security. The phenomena are intertwined and also in conflict with each other. Interaction is a complex dialectic process in which those who are engaged meet problems that can be solved and are involved in dilemmas that cannot be solved, only related to.
The Australian Safety and Efficacy Register for New Interventional Procedures - Surgical (ASERNIP-S) undertakes horizon scanning, systematic reviews and audits. By disseminating information derived from these processes, ASERNIP-S aims to improve the quality of health care. In the present article, we discuss some of the legal and ethical issues surrounding the collection of identified data for the purposes of audit. The individual's right to privacy is considered as well as the benefits of improving the quality of surgical health care.
Teleradiology is now well established within healthcare in the USA, but ethico-legal concepts surrounding this innovation remain unclear. New legislation, the Health Insurance Portability and Accountability Act, as well as ethical guidelines and common law demonstrate the importance being placed on security of electronic data and the protection of patients' personal data. Radiologists need to be aware of the security, privacy, and confidentiality issues which relate to teleradiology, so that they can safeguard not only their own interests but also the best interests of their patients.
Nurses are responsible to protect the confidentiality and security of patients' health information. In the critical care setting, these privacy and confidentiality issues may be even more poignant. If able to carry on with their normal lives after discharge, many of the patients that nurses treat will have some sequelae from their illnesses that could affect their careers, finances, and personal lives. This article reviews the current literature, presents a discussion of confidentiality and security as it applies to uniquely identifiable health information, and offers some "best practices" that can be used in daily practice. Furthermore, the author discusses the Health Insurance Portability and Accountability Act of 1996 and details some reasons why the act is not fully implemented a full 6 years after it was signed into law.
Surveillance is the radar of public health. It has provided the foundation for public health planning, intervention, and prevention. Important ethical issues regarding privacy--the extent to which name-based reporting violates the trust and assumptions made about how personal medical information will be treated--are raised by public health surveillance. This policy forum looks at the contexts of differing responses from the public health communities and general public to surveillance efforts.