Pamela Sankar

Clinical Trials and Medical Care: Defining the Therapeutic Misconception

A key component of informed consent to participate in medical research includes understanding that research is not the same as treatment.

Between two worlds: Medical student perceptions of humor and slang in the hospital setting

AbstractOBJECTIVE: Residents frequently use humor and slang at the expense of patients on the clinical wards. We studied how medical students react to and interpret the “appropriateness” of derogatory and cynical humor and slang in a clinical setting. DESIGN: Semistructured, in-depth interviews. SETTING: Informal meeting spaces. PARTICIPANTS: Thirty-three medical students. MEASUREMENTS: Qualitative content analysis of interview transcriptions. MAIN RESULTS: Students’ descriptions of the humorous stories and their responses reveal that students are able to take the perspective of both outsiders and insiders in the medical culture. Students’ responses to these stories show that they can identify the outsider’s perspective both by seeing themselves in the outsider’s role and by identifying with patients. Students can also see the insider’s perspective, in that they identify with residents’ frustrations and disappointments and therefore try to explain why residents use this kind of humor. Their participation in the humor and slang—often with reservations—further reveals their ability to identify with the perspective of an insider. CONCLUSIONS: Medical students describe a number of conflicting reactions to hospital humor that may enhance and exacerbate tensions that are already an inevitable part of training for many students. This phenomenon requires greater attention by medical educators.

Differences in the Patterns of Health Care System Distrust Between Blacks and Whites

ContextAlthough health care-related distrust may contribute to racial disparities in health and health care in the US, current evidence about racial differences in distrust is often conflicting, largely limited to measures of physician trust, and rarely linked to multidimensional trust or distrust.ObjectiveTo test the hypothesis that racial differences in health care system distrust are more closely linked to values distrust than to competence distrust.DesignCross-sectional telephone survey.ParticipantsTwo hundred fifty-five individuals (144 black, 92 white) who had been treated in primary care practices or the emergency department of a large, urban Mid-Atlantic health system.Primary measuresRace, scores on the overall health care system distrust scale and on the 2 distrust subscales, values distrust and competence distrust.ResultsIn univariate analysis, overall health care system distrust scores were slightly higher among blacks than whites (25.8 vs 24.1, p = .05); however, this difference was driven by racial differences in values distrust scores (15.4 vs 13.8, p = .003) rather than in competence distrust scores (10.4 vs 10.3, p = .85). After adjustment for socioeconomic status, health/psychological status, and health care access, individuals in the top quartile of values distrust were significantly more likely to be black (odds ratio = 2.60, 95% confidence interval = 1.03–6.58), but there was no significant association between race and competence distrust.ConclusionsRacial differences in health care system distrust are complex with far greater differences seen in the domain of values distrust than in competence distrust. This framework may be useful for explaining the mixed results of studies of race and health care-related distrust to date, for the design of future studies exploring the causes of racial disparities in health and health care, and for the development and testing of novel strategies for reducing these disparities.

Race and ancestry in biomedical research: exploring the challenges.

The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms.

Patient Perspectives of Medical Confidentiality: A Review of the Literature

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality.DESIGN: Studies were found by searching MEDLINE, BIOETHICSLINE, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients’ confidentiality views and conduct were included.MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information.CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.

How do AD patients and their caregivers decide whether to enroll in a clinical trial

To examine how patients and caregivers decide whether to enroll in a clinical trial, the authors conducted semi-structured interviews with 22 family caregivers of patients with mild to moderate AD who were recruited for a clinical trial. They found that a caregiver who enrolls a patient in research generally involves the patient in the decision-making process, reports that the patient shares in the decision, and regards the risks and benefits to the patient and to the caregiver as interdependent.

Patient perspectives on medical confidentiality

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality.DESIGN: Studies were found by searching MEDLINE, BIOETHICSLINE, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients’ confidentiality views and conduct were included.MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information.CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.

Iceland Inc.?: On the ethics of commercial population genomics

A detailed analysis of the Icelandic commercial population-wide genomics database project of deCODE Genetics was performed for the purpose of providing ethics insights into public/private efforts to develop genetic databases. This analysis examines the moral differences between the general case of governmental collection of medical data for public health purposes and the centralized collection planned in Iceland. Both the process of developing the database and its design vary in significant ways from typical government data collection and analysis activities. Because of these differences, the database may serve the interests of deCODE more than it serves the interests of the public, undermining the claim that presumed consent for this data collection and its proprietary use is ethical. We believe that there is an evolving consensus that informed consent of participants must be secured for population-based genetics databases and research. The Iceland model provides an informative counterexample that holds key ethics lessons for similar ventures.

What is in a cause? Exploring the relationship between genetic cause and felt stigma

Purpose: Concern over stigma as a consequence of genetic testing has grown in response to the recent increase in genetic research and testing resulting from the Human Genome Project. However, whether a genetic or hereditary basis necessarily confers a stigma to a condition remains unexamined.Methods: We performed a qualitative interview study with 86 individuals with one of four conditions: deafness or hearing loss, breast cancer, sickle cell disease, and cystic fibrosis. The first two groups were divided approximately between people who ascribed their conditions to a genetic or hereditary cause and those who did not.Results: Respondents interpreted genetic or hereditary causes and nongenetic causes in a variety of ways. Subjects with breast cancer reported the most consistently negative interpretation of genetic cause. This response concerned future ill health, not an enduring sense of stigma. Deaf and hard of hearing subjects provided the most consistently positive comments about a genetic or hereditary basis to their condition, casting familial hearing loss as a vital component of group and individual identity. Respondents with sickle cell disease and cystic fibrosis offered similar and positive interpretations of the genetic cause of their condition insofar as it meant their conditions were not contagious.Conclusions: Although some subjects report feeling stigmatized as a result of their condition, this stigmatization is not uniformly associated with the conditions cause, genetic or otherwise. Instead, stigma emerges from a variety of sources in the context of the lived experience of a particular condition.

Reflections on the Cost of "Low-Cost" Whole Genome Sequencing: Framing the Health Policy Debate

The future clinical applications of whole genome sequencing come with speculation and enthusiasm but require careful consideration of the true system costs and health benefits of the clinical uses of this exciting technology.