The importance of a genetic link in mothers commissioning a surrogate baby in the UK.
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Reproductive technologies have enabled genetic and gestational links between parents and children to become separate from social relationships and inter-personal ties within families. The meaning of family is discussed, by drawing on research with infertile women who become parents as the result of surrogacy. The complexities of family are highlighted by addressing the consequences of babies carried and delivered by women who are not the biological parents of the child, or by women who are the biological mother of the child but who relinquish their genetic material to another woman. In all, 29 women completed a questionnaire on various aspects of their infertility, surrogacy, and the importance of a genetic link. The study identified some characteristics of women who have become mothers as a result of surrogacy, and some of their reactions to this way of creating families. In general, women who could use their own genetic material tended to believe a genetic link was important. Those who could not use their own genetic material were less uniform in their beliefs about the importance of a genetic link. The cognitive dissonance observed in this population has implications for the future of reproductive technology assisting couples in becoming a family with or without genetic relatedness. (+info)
Confidential clinician-reported surveillance of adverse events among medical inpatients.
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BACKGROUND: Although iatrogenic injury poses a significant risk to hospitalized patients, detection of adverse events (AEs) is costly and difficult. METHODS: The authors developed a confidential reporting method for detecting AEs on a medicine unit of a teaching hospital. Adverse events were defined as patient injuries. Potential adverse events (PAEs) represented errors that could have, but did not result in harm. Investigators interviewed house officers during morning rounds and by e-mail, asking them to identify obstacles to high quality care and iatrogenic injuries. They compared house officer reports with hospital incident reports and patients' medical records. A multivariate regression model identified correlates of reporting. RESULTS: One hundred ten events occurred, affecting 84 patients. Queries by e-mail (incidence rate ratio [IRR] = 0.16; 95% confidence interval [95% CI], 0.05 to 0.49) and on days when house officers rotated to a new service (IRR = 0.12; 95% CI, 0.02 to 0.91) resulted in fewer reports. The most commonly reported process of care problems were inadequate evaluation of the patient (16.4%), failure to monitor or follow up (12.7%), and failure of the laboratory to perform a test (12.7%). Respondents identified 29 (26. 4%) AEs, 52 (47.3%) PAEs, and 29 (26.4%) other house officer-identified quality problems. An AE occurred in 2.6% of admissions. The hospital incident reporting system detected only one house officer-reported event. Chart review corroborated 72.9% of events. CONCLUSIONS: House officers detect many AEs among inpatients. Confidential peer interviews of front-line providers is a promising method for identifying medical errors and substandard quality. (+info)
Patient participation in research in the managed care environment: key perceptions of members in an HMO.
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This study's objective was to elicit the views of research among enrollees in an HMO. A questionnaire was mailed to 207 adult enrollees, 55% had been exposed to research and 45% had not. Ninety-four percent of respondents supported research within the HMO, and 87% thought using information from medical records for research was acceptable. Sixty-three percent thought participation in research increased patient understanding of health care. Significantly more prior research participants thought that participation in research improves care. More patients would participate if written information were provided (67%), if feedback of results was provided (72%), and if their clinician invited them (67%). Only a modest percentage (20%) of patients would participate in a randomized trial. (+info)
Current medicolegal and confidentiality issues in large, multicenter research programs.
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The convenience of fast computers and the Internet have encouraged large collaborative research efforts by allowing transfers of data from multiple sites to a single data repository; however, standards for managing data security are needed to protect the confidentiality of participants. Through Dartmouth Medical School, in 1996-1998, the authors conducted a medicolegal analysis of federal laws, state statutes, and institutional policies in eight states and three different types of health care settings, which are part of a breast cancer surveillance consortium contributing data electronically to a centralized data repository. They learned that a variety of state and federal laws are available to protect confidentiality of professional and lay research participants. The strongest protection available is the Federal Certificate of Confidentiality, which supersedes state statutory protection, has been tested in court, and extends protection from forced disclosure (in litigation) to health care providers as well as patients. This paper describes the careful planning necessary to ensure adequate legal protection and data security, which must include a comprehensive understanding of state and federal protections applicable to medical research. Researchers must also develop rules or guidelines to ensure appropriate collection, use, and sharing of data. Finally, systems for the storage of both paper and electronic records must be as secure as possible. (+info)
Antiretroviral interventions to reduce mother-to-child transmission of human immunodeficiency virus: challenges for health systems, communities and society.
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This paper examines the ethical, economic and social issues that should be considered when antiretroviral interventions are being planned to reduce mother-to-child transmission of the human immunodeficiency virus. Interventions aiming to reduce mother-to-child transmission should be concerned with the rights of both the child and the mother. Women should not be seen as vectors of transmission but as people entitled to adequate health care and social services in their own right. For women accepting mother-to-child transmission interventions it is important to consider their medical and emotional needs and to ensure that they are not stigmatized or subjected to abuse or abandonment following voluntary counselling and testing. Seropositive women who do not wish to continue with pregnancy should have access to facilities for safe termination if this is legal in the country concerned. Problems arise in relation to the basic requirements for introducing such interventions via the health services in developing countries. A framework is given for making decisions about implementation of interventions in health care systems with limited resources where there is a relatively high prevalence of human immunodeficiency virus infection among pregnant women. (+info)
Reporting by physicians of impaired drivers and potentially impaired drivers. The Committee on Bioethical Issues of the Medical Society of the State of New York.
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Physicians routinely care for patients whose ability to operate a motor vehicle is compromised by a physical or cognitive condition. Physician management of this health information has ethical and legal implications. These concerns have been insufficiently addressed by professional organizations and public agencies. The legal status in the United States and Canada of reporting of impaired drivers is reviewed. The American Medical Association's position is detailed. Finally, the Bioethics Committee of the Medical Society of the State of New York proposes elements for an ethically defensible public response to this problem. (+info)
Teenagers educating teenagers about reproductive health and their rights to confidential care.(55/1270)
Protection of privacy by third-party encryption in genetic research in Iceland.
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As the new human genetics continues its dramatic expansion into many laboratories and medical institutions, the concern for the protection of the personal privacy of individuals who participate increases. It seems that even the smallest of laboratories must confront the issue of how to protect the genetic and phenotypic information of participants in their research. Some have promoted the use of anonymity as a way out of this dilemma. But we are reminded by others that the future cannot be predicted, and that future benefits may be lost when the links to these benevolent volunteers are gone forever. More recently, some ethical bodies have suggested, without specific recommendations, that a reversible third-party encryption system may be a solution to this problem. However, they have not provided a route or even examples of how to proceed. We present here the Icelandic approach to this issue by developing a third-party encryption system in direct collaboration with the Data Protection Commission (DPC) of Iceland. We have incorporated the encryption system within our sample collection and storage software, which minimises inconvenience but enhances security. The strategy assures a barrier between the laboratory and the outside world that can only be crossed by the DPC. (+info)