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BACKGROUND: Identifying eligible individuals for a prevalence survey is difficult in the absence of a disease register or a national population register. AIM: To develop a method to identify and invite eligible individuals to participate in a national prevalence survey while maintaining confidentiality and complying with privacy legislation. METHODS: A unique identifier (based on date of birth, sex and initials) was developed so that database holders could identify eligible individuals, notify us and invite them on our behalf to participate in a national multiple sclerosis prevalence survey while maintaining confidentiality and complying with privacy legislation. RESULTS: Several organisations (including central government, health and non-governmental organisations) used the method described to assign unique identifiers to individuals listed on their databases and to forward invitations and consent forms to them. The use of a unique identifier allowed us to recognise and record all the sources of identification for each individual. This prevented double counting or approaching the same individual more than once and facilitated the use of capture-recapture methods to improve the prevalence estimate. Capture-recapture analysis estimated that the method identified over 96% of eligible individuals in this prevalence survey. CONCLUSIONS: This method was developed and used successfully in a national prevalence survey of multiple sclerosis in New Zealand. The method may be useful for prevalence surveys of other diseases in New Zealand and for prevalence surveys in other countries with similar privacy legislation and lack of disease registers and population registers.

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OBJECTIVES: The aim of this study was to assess empirically the social and ethical risks associated with implantable radio-frequency identification (RFID) devices. METHODS: Qualitative research included observational studies in twenty-three U.S. hospitals that have implemented new patient identification systems and eighty semi-structured interviews about the social and ethical implications of new patient identification systems, including RFID implants. RESULTS: The study identified three primary social and ethical risks associated with RFID implants: (i) unfair prioritization of patients based on their participation in the system, (ii) diminished trust of patients by care providers, and (iii) endangerment of patients who misunderstand the capabilities of the systems. CONCLUSIONS: RFID implants may aggravate inequalities in access to care without any clear health benefits. This research underscores the importance of critically evaluating new healthcare technologies from the perspective of both normative ethics and empirical ethics.

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Swedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.

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This article reviews the use of implantable radiofrequency identification (RFID) tags in humans, focusing on the VeriChip (VeriChip Corporation, Delray Beach, FL) and the associated VeriMed patient identification system. In addition, various nonmedical applications for implanted RFID tags in humans have been proposed. The technology offers important health and nonhealth benefits, but raises ethical concerns, including privacy and the potential for coercive implantation of RFID tags in individuals. A national discussion is needed to identify the limits of acceptable use of implantable RFID tags in humans before their use becomes widespread and it becomes too late to prevent misuse of this useful but ethically problematic technology.

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Linking health data with census data on ethnicity has potential benefits for the health of ethnic minority groups. Ethical objections to linking these data however include concerns about informed consent and the possibility of the findings being misused against the interests of ethnic minority groups. While consent concerns may be allayed by procedures to safeguard anonymity and respect privacy, robust procedures to demonstrate public approval of data linkage also need to be devised. The possibility of findings being misused against the interests of ethnic minority groups may be diminished by informed and open public discussion in mature democracies, but remain a concern in the international context.

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Identity is important when it is weak. This apparent paradox is the core of the current debate on identity. Traditionally, verification of identity has been based upon authentication of attributed and biographical characteristics. After small scale societies and large scale, industrial societies, globalization represents the third period of personal identification. The human body lies at the heart of all strategies for identity management. The tension between human body and personal identity is critical in the health care sector. The health care sector is second only to the financial sector in term of the number of biometric users. Many hospitals and healthcare organizations are in progress to deploy biometric security architecture. Secure identification is critical in the health care system, both to control logic access to centralized archives of digitized patients' data, and to limit physical access to buildings and hospital wards, and to authenticate medical and social support personnel. There is also an increasing need to identify patients with a high degree of certainty. Finally there is the risk that biometric authentication devices can significantly reveal any health information. All these issues require a careful ethical and political scrutiny.

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The legal requirements and justifications for collecting patient-identifiable data without patient consent were examined. The impetus for this arose from legal and ethical issues raised during the development of a population-based disease register. Numerous commentaries and case studies have been discussing the impact of the Data Protection Act 1998 (DPA1998) and Caldicott principles of good practice on the uses of personal data. But uncertainty still remains about the legal requirements for processing patient-identifiable data without patient consent for research purposes. This is largely owing to ignorance, or misunderstandings of the implications of the common law duty of confidentiality and section 60 of the Health and Social Care Act 2001. The common law duty of confidentiality states that patient-identifiable data should not be provided to third parties, regardless of compliance with the DPA1998. It is an obligation derived from case law, and is open to interpretation. Compliance with section 60 ensures that collection of patient-identifiable data without patient consent is lawful despite the duty of confidentiality. Fears regarding the duty of confidentiality have resulted in a common misconception that section 60 must be complied with. Although this is not the case, section 60 support does provide the most secure basis in law for collecting such data. Using our own experience in developing a disease register as a backdrop, this article will clarify the procedures, risks and potential costs of applying for section 60 support.

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Success stories of modern applications in healthcare and welfare, like the electronic health record, are always linked to end user awareness, confidence, and acceptance. Reports and surveys have given proof of these dependencies. Knowing about existing and emerging concerns and weaknesses right in advance allows to taking actions on an ethical, social, and societal level. This paper gives a review of specific observations regarding security, privacy, authentication, integrity and ethical aspects when operating an electronic health record (EHR) system in a hospital, an open care department and in a wider community of the health care sector. A reference is given to existing and emerging international standards related to the aforementioned aspects.

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The use of patient-identifiable data in epidemiological research is subject to increasingly complex regulation. This article reports the experience of a research team in setting up the Epidemiology and Survival of Transfusion Recipients (EASTR) study in which patient-identifiable information was needed in order to link data from two sources for analysis and obtain long-term survival patterns of transfusion recipients. The process of establishing the study involved obtaining separate ethical, research and development and data protection approval, including application to the newly formed Patient Information Advisory Group, set up under Section 60 of the Health and Social Care Act, 2001. We describe the high cost in administrative procedures and time now necessary to gain statutory approval before such a study can begin, which has been the result of recent legislation. Issues arising from our experience are discussed.

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We report on two patients who have recently required emergency surgery and who were wearing personal identity devices at the time of presentation. The devices bear a telephone number and a message stating that, if found, the management company should be informed of the whereabouts of their owner. We discuss the issues relating to the disclosure of information to a third party in this situation and whether there is any legal obligation to do so. The conclusion of a review of the relevant literature is that the only reason to divulge information to a third party would be if a patient posed a serious risk of death or serious harm to another party. In the majority of foreseeable circumstances, this would not be the case.

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