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J Sugarman

Publications and source records attributed to J Sugarman.

At least 37 records · Page 2Linked to original sources
PubMed2000

Talking about cases in bioethics: the effect of an intensive course on health care professionals.

Educational efforts in bioethics are prevalent, but little is known about their efficacy. Although previous work indicates that courses in bioethics have a demonstrable effect on medical students, it has not examined their effect on health care professionals. In this report, we describe a study designed to investigate the effect of bioethics education on health care professionals. At the Intensive Bioethics Course, a six-day course held annually at Georgetown University, we administered a questionnaire requiring open-ended responses to vignettes both before and after the course. Following the course, respondents defended their responses more carefully and articulated their thoughts more clearly. In addition, after the course respondents seemed to have a more subtle understanding of the relevant issues in the cases and applied theory to these cases more frequently. These findings help to formulate an understanding of the effect of bioethics education on health care professionals.

Adult↗
PubMed2000

Between the modern and the postmodern. The possibility of self and progressive understanding in psychology.

Psychology assumes defensible notions of human subjectivity and understanding. Yet, some versions of postmodernism, including some of those currently influential within psychology, eschew the possibility of the kind of understanding-capable personhood on which modern psychology has depended. The authors argue for a skeptical, middle-ground position that might allow psychologists to resist a forced choice between modernism and postmodernism in their subject matter and understanding. The authors set up their argument with 2 stories of human development and change. These stories assume no fixed, essentialist foundations of the sort favored in classically modern psychologies, yet they maintain the possibility of both self and understanding within a real but contingent physical, biological, and sociocultural world. The authors then articulate a middle-ground position as one that avoids the fixed foundationalism, essentialism, and absolute certitude of modernity, without endorsing the radical arbitrariness, antisubjectivism, and anarchistic relativism of some versions of postmodernity.

Ego↗
PubMed1999

Ethical ramifications of alternative means of recruiting research participants from cancer registries.

BACKGROUND: The protection of confidentiality and the extent to which voluntary and meaningful informed consent can be obtained from potential participants are critical when recruiting patients for clinical research from cancer registries. In the current study the authors describe the influence of two methods of recruitment from a cancer registry (direct contact by research staff and contact by research staff after physicians alert potential participants) on these issues. METHODS: Enrollment rates were tabulated using each recruitment method and complaints received from potential participants regarding recruitment were reviewed. RESULTS: Of 416 women approached to participate, the first 351 women were recruited by way of direct contact by research staff and the remaining 65 women were recruited by research staff after their physician had sent them an alert letter. There was no difference in the enrollment rate using the two methods. One potential participant believed that her confidentiality had been violated and another hung up the telephone when contacted directly; two potential subjects reported feeling pressure to participate because their physician sent them a letter. CONCLUSIONS: Although concerns regarding violating confidentiality clearly are justified when recruiting research participants from cancer registries, patients also may feel pressure to participate if physician notification is part of the process. It is incumbent on investigators and institutional review boards charged with overseeing this research that they respect confidentiality and avoid pressuring persons to participate in research. It also is critical that persons whose medical information will be entered into cancer registries be informed about this process as well as how the registry will be used for research.

Adult↗
PubMed1999

Improving informed consent in clinical trials: a duty to experiment.

Practitioners of clinical trials have a responsibility to ensure that patients' participation in research be informed and voluntary. This responsibility implies that we should strive continuously to improve the effectiveness of methods for informing prospective research volunteers about experimental studies, thereby enhancing the protection of their interests. We should test innovations in informed consent in realistic contexts (i.e., in clinical trials) and with randomization, when it is appropriate, at the first opportunity. In this study, we develop a preliminary proposal to improve the quality of informed consent, based on experimentation with informed consent in ongoing clinical trials. We discuss the conceptual, ethical, organizational, and technical bases for such an effort.

Choice Behavior↗
PubMed1999

A comparison of the national registry of myocardial infarction 2 with the cooperative cardiovascular project.

OBJECTIVES: This study was performed to evaluate whether or not the simpler case identification and data abstraction processes used in National Registry of Myocardial Infarction two (NRMI 2) are comparable with the more rigorous processes utilized in the Cooperative Cardiovascular Project (CCP). BACKGROUND: The increased demand for quality of care and outcomes data in hospitalized patients has resulted in a proliferation of databases of varying quality. For patients admitted with myocardial infarction, there are two national databases that attempt to capture critical process and outcome data using different case identification and abstraction processes. METHODS: We compared case ascertainment and data elements collected in Medicare-eligible patients included in the industry-sponsored NRMI 2 with Medicare enrollees included in the Health Care Financing Administration-sponsored CCP who were admitted during identical enrollment periods. Internal and external validity of NRMI 2 was defined using the CCP as the "gold standard." RESULTS: Demographic and procedure use data obtained independently in each database were nearly identical. There was a tendency for NRMI 2 to identify past medical histories such as prior infarct (29% vs. 31%, p < 0.001) or heart failure (21% vs. 25%, p < 0.001) less frequently than the CCP. Hospital mortality was calculated to be higher in NRMI 2 (19.7% vs. 18.1%, p < 0.001) due mostly to the inclusion of noninsured patients 65 years and older in NRMI 2. CONCLUSIONS: We conclude that the simpler case ascertainment and data collection strategies employed by NRMI 2 result in process and outcome measures that are comparable to the more rigorous methods utilized by the CCP. Outcomes that are more difficult to measure from retrospective chart review such as stroke and recurrent myocardial infarction must be interpreted cautiously.

Aged↗
PubMed1998

Pregnant women's perspectives on umbilical cord blood banking.

Promising clinical results suggest that umbilical cord blood (UCB) collected after delivery of a child may have many advantages over bone marrow for transplantation. As there are an increasing number of options regarding the collection of UCB, including private and public banking, more pregnant women are likely to be asked to make decisions about UCB collection. We conducted three focus groups with pregnant women to learn about their perspectives on this emerging technology. All the women in these focus groups indicated that they would choose to have UCB collected. Reasons leading to this choice were that the UCB would otherwise be discarded and altruism. Participants indicated that possible reasons to decide not to have UCB collected include concerns about the safety of the mother and neonate, beliefs about the placenta, threats against confidentiality, rejection of UCB, and the influence of fathers. While feeling confident in making an anticipatory decision about UCB collection, women expressed a clear desire to learn much more about the collection, storage (including distinctions between public and private banking), and use of UCB. In addition, they believed that recruitment for UCB collection should occur after sufficient education about UCB and certainly not after delivery and collection. These data will be useful in guiding efforts to help women make decisions about having UCB collected and in developing an appropriate recruitment and informed consent process for donating UCB to a public bank.

Adult↗
PubMed1998

Getting meaningful informed consent from older adults: a structured literature review of empirical research.

OBJECTIVES: To perform a structured literature review of the published empirical research on informed consent with older adults in order to make recommendations to improve the informed consent process and to highlight areas needing further examination. DESIGN: Relevant literature was identified by searching electronic databases (AGELINE, BIOETHICSLINE, CancerLit, Ethics Index, Health, LegalTrac, MEDLINE, PAIS International, PsycInfo, and Sociofile). Studies were included if they were reports of primary research data about informed consent and, if patients or other subjects were used, older subjects were included in the sample. Data related to the aspect of informed consent under study (recruitment, decision-making capacity, voluntariness, disclosure of information, understanding of information, consent forms, authorization, and policies and procedures) were abstracted and entered into a specially designed database. MEASUREMENTS: Characterization of the population, age of subjects, setting, whether informed consent was being studied in the context of research or treatment, study design, the nature of outcome or dependent variables, independent variables (e.g., experimental conditions in a randomized controlled trial or patient/subject characteristics in a nonrandomized comparison), and results according to the aspect of informed consent under study. RESULTS: A total of 99 articles met all the inclusion criteria and posed 289 unique research questions covering a wide range of aspects of informed consent: recruitment (60); decision making capacity (21); voluntariness (6); disclosure (30); understanding (139); consent forms (7); authorization (11); policies (13); and other (2). In the secondary analyses of numerous studies, diminished understanding of informed consent information was associated with older age and fewer years of education. Older age was also sometimes associated with decreased participation in research. Studies of disclosure of informed consent information suggest strategies to improve understanding and include a variety of novel formats (e.g., simplified, storybook, video) and procedures (e.g., use of health educators, quizzing subjects, multiple disclosure sessions). CONCLUSIONS: A systematic review of the published literature on informed consent reveals evidence for impaired understanding of informed consent information in older subjects and those with less formal education. Effective strategies to improve the understanding of informed consent information should be considered when designing materials, forms, policies, and procedures for obtaining informed consent. Other than empirical research that has investigated disclosure and understanding of informed consent information, little systematic research has examined other aspects of the informed consent process. This deficit should be rectified to ensure that the rights and interests of patients and of human subjects who participate in research are adequately protected.

Adult↗
PubMed1998

Informed consent for BRCA1 and BRCA2 testing.

While the cloning of BRCA1 and BRCA2 in 1994 and 1995 engendered great enthusiasm from cancer patients, their families and physicians, concerns about potential problems faced by those undergoing genetic testing were also evident. Although much can be learned from previous research on informed consent for testing and research for predictive genetic testing in diseases other than cancer, there are some specific issues related to cancer that make the questions more pressing, more difficult, and of larger social concern. Organizations such as the National Advisory Council for Human Genome Research, the American Society for Human Genetics, the American Society of Clinical Oncology and the Task Force for Genetic Testing have presented recommendations about informed consent for cancer susceptibility testing. However, many unanswered questions remain concerning the informed consent process. This review provides background on informed consent, summarizes studies that have been conducted in the area of genetic testing, with a focus on testing for BRCA1 and BRCA2, and details recommendations for achieving informed consent for genetic testing for cancer susceptibility and research on cancer genetics.

Breast Neoplasms↗
PubMed1997

Ethical issues in umbilical cord blood banking. Working Group on Ethical Issues in Umbilical Cord Blood Banking.

OBJECTIVE: Banking umbilical cord blood (UCB) to be used as a source of stem cells for transplantation is associated with a set of ethical issues. An examination of these issues is needed to inform public policy and to raise the awareness of prospective parents, clinicians, and investigators. PARTICIPANTS: Individuals with expertise in anthropology, blood banking, bone marrow transplantation, ethics, law, obstetrics, pediatrics, and the social sciences were invited to join the Working Group on Ethical Issues in Umbilical Cord Blood Banking. EVIDENCE: Members were assigned topics to present to the Working Group. Following independent reviews, background materials were sent to the Working Group. CONSENSUS PROCESS: Individual presentations of topics at a 2-day meeting were followed by extensive group discussions in which consensus emerged. A writing committee then drafted a document that was circulated to the entire Working Group. After 3 rounds of comments over several months, all but 1 member of the Working Group agreed with the presentation of our conclusions. CONCLUSIONS: (1) Umbilical cord blood technology is promising although it has several investigational aspects; (2) during this investigational phase, secure linkage should be maintained of stored UCB to the identity of the donor; (3) UCB banking for autologous use is associated with even greater uncertainty than banking for allogeneic use; (4) marketing practices for UCB banking in the private sector need close attention; (5) more data are needed to ensure that recruitment for banking and use of UCB are equitable; and (6) the process of obtaining informed consent for collection of UCB should begin before labor and delivery.

Biomedical Research↗
PubMed1997

Pediatric cervical spine injury sustained in falls from low heights.

STUDY OBJECTIVE: To determine whether history and clinical examination findings can identify young children who have sustained cervical injury after falling short distances. METHODS: We conducted a retrospective review of the medical records of children younger than 6 years old with the diagnosis of cervical vertebral fracture or cervical spinal cord injury after a fall of less than 5 feet. Data from medical records over an average time span of 11 years at four large children's hospitals were compiled. RESULTS: We identified eight children who sustained cervical spine injury after a fall of less than 5 feet. These children ranged in age from 9 to 68 months. Three had rotary subluxation of C1, and three had subluxation of C1-C2. One of the children in the latter group also had an odontoid fracture. Two children had a fracture of C2. All the children had limited range of motion of the neck or neck pain. CONCLUSION: All children in this study with the diagnosis of cervical spine injury had clinical evidence of that injury on history or physical examination. Clinicians treating asymptomatic young children who sustain short falls may not need to perform radiographic evaluation of the cervical spine.

Accidental Falls↗
PubMed1996

Measuring defensive medicine using clinical scenario surveys.

For more than two decades, advocates of malpractice system reform have claimed that the most damaging and costly result of the U.S. medical malpractice system is the practice of defensive medicine, in which physicians order tests and procedures primarily because of fear of malpractice liability. In this article, we discuss the issues raised by different definitions of defensive medicine and propose a working definition to guide measurement of the concept. We also consider the strengths and weaknesses of available approaches for measuring defensive medicine. Finally, we describe an empirical approach to measuring defensive medicine using clinical scenario surveys. The results suggest that, if physicians actually practice as they say they would in these surveys, defensive medicine does exist, although not to the extent suggested by anecdotal evidence or direct physician surveys. The results also suggest that defensive medicine varies considerably across clinical situations. In all of the scenarios, many physicians chose aggressive patient management styles even though conservative management was considered medically acceptable by the expert panels that developed the scenarios. In most cases, medical indications, not malpractice concerns, motivated clinical choices. Our results highlight the limitations of surveys as a method of measuring the extent of defensive medicine. The implications of managed care and health care reform for defensive medicine are also discussed.

Attitude of Health Personnel↗
PubMed1995

Ethical aspects of banking placental blood for transplantation.

Transplantation of blood cells harvested from the umbilical cord immediately after birth has been effective in repopulating the bone marrow. These placental blood transplantations may be safer than conventional bone marrow transplantations and may suspend the need to harvest bone marrow, a process fraught with difficulties. Further understanding and advancement of this emerging technology require developing large banks of placental blood. In this article, we examine some of the ethical issues associated with placental blood banking, including (1) questions about ownership of the tissue, (2) the necessity and nature of obtaining informed consent from parents for harvesting placental blood and the information-gathering process associated with it, (3) obligations to notify parents and children of the results of medical testing for infectious diseases and genetic information, (4) matters of privacy and confidentiality related to such information, and (5) the need for fair and equitable harvesting of and access to placental blood.

Blood Banks↗