Sankar, Pamela

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Now showing 1 - 7 of 7
  • Publication
    Research Issues in Genetic Testing of Adolescents for Obesity
    (2004-08-01) Segal, Mary E; Sankar, Pamela; Reed, Danielle R
    Obesity is often established in adolescence, and advances are being made in identifying its genetic underpinnings. We examine issues related to the eventual likelihood of genetic tests for obesity targeted to adolescents: family involvement; comprehension of the test’s meaning; how knowledge of genetic status may affect psychological adaptation; minors’ ability to control events; parental/child autonomy; ability to make informed medical decisions; self-esteem; unclear distinctions between early/late onset for this condition; and social stigmatization. The public health arena will be important in educating families about possible future genetic tests for obesity.
  • Publication
    Communication and Miscommunication in Informed Consent to Research
    (2004-12-01) Sankar, Pamela
    Biomedical ethics require that research subjects be aware that the drugs they take or procedures they undergo are designed to fulfill the conditions of the experiment and not to benefit a subject’s health. This apparently straightforward distinction between research and treatment is a source of much controversy and misunderstanding. Ethicists have labeled this problem the "therapeutic misconception." This misconception and, more broadly, informed consent have been studied extensively. Nonetheless, the therapeutic misconception persists among research subjects. This paper argues that one factor overlooked in the persistence of the therapeutic misconception is the effect of the theoretical paradigm that guides the practice and analysis of informed consent. The paradigm poses an idealized model of communication that ignores social context. This paper examines informed consent practices associated with a cancer research trial to demonstrate an alternative approach to studying informed consent to research. Through analysis of informed consent session transcripts, it demonstrates the importance of taking account of not only what is said, but how and by whom it is said.
  • Publication
    Conducting Empirical Research on Informed Consent: Challenges and Questions
    (2003-10-01) Sachs, Greg A; Hougham, Gavin W; Sugarman, Jeremy; Agre, Patricia; Broome, Marion E; Geller, Gail; Kass, Nancy; Kodish, Eric; Mintz, Jim; Roberts, Laura W; Sankar, Pamela; Siminoff, Laura E; Sorenson, James; Weiss, Anita
  • Publication
    Open Label Extension Studies and the Ethical Design of Clinical Trials
    (2001-08-01) Cassarett, David; Karlawish, Jason; Sankar, Pamela; Hirschman, Karen; Asch, David A.
  • Publication
    Pilot Study: Does the White Coat Influence Research Participation?
    (2002-07-01) Merz, Jon F; Rebbeck, Timothy R; Sankar, Pamela; Meagher, Emma A
    In health care, the white coat symbolizes professionalism, trustworthiness, and competence; it also represents power. This suggests that the wearing of a white coat could influence the decisions of potential subjects who are asked to participate in clinic-based research.
  • Publication
    Older Adults’ Attitudes Toward Enrollment of Noncompetent Subjects Participating in Alzheimer’s Research
    (2009-02-01) Karlawish, Jason; Rubright, Jonathan; Casarett, David; Cary, Mark; Ten Have, Thomas; Sankar, Pamela
    OBJECTIVE: Research that seeks to enroll noncompetent patients with Alzheimer’s disease without presenting any potential benefit to participants is the source of substantial ethical controversy. The authors used hypothetical Alzheimer’s disease studies that included either a blood draw or a blood draw and lumbar puncture to explore older persons’ attitudes on this question. METHOD: Face-to-face interviews were conducted with 538 persons age 65 and older. Questions explored participants’ understanding of research concepts, their views on enrolling persons with Alzheimer’s disease in research, and their preferences regarding having a proxy decision maker, granting advance consent, and granting their proxy leeway to override the participant’s decision. Additional questions assessed altruism, trust, value for research, and perceptions of Alzheimer’s disease. RESULTS: The majority (83%) were willing to grant advance consent to a blood draw study, and nearly half (48%) to a blood draw plus lumbar puncture study. Most (96%) were willing to identify a proxy for research decision making, and most were willing to grant their proxy leeway over their advance consent: 81% for the blood draw study and 70% for the blood draw plus lumbar puncture study. Combining the preferences for advance consent and leeway, the proportion who would permit being enrolled in the blood draw and lumbar puncture studies, respectively, were 92% and 75%. Multivariate models showed that willingness to be enrolled in research was most strongly associated with a favorable attitude toward biomedical research. CONCLUSIONS: Older adults generally support enrolling noncompetent persons with Alzheimer’s disease into research that does not present a benefit to subjects. Willingness to grant their proxy leeway over advance consent and a favorable attitude about biomedical research substantially explain this willingness.
  • Publication
    A qualitative study of women’s views on medical confidentiality
    (2005-09-01) Merz, Jon F; Jenkins, G; Sankar, Pamela
    Context: The need to reinvigorate medical confidentiality protections is recognised as an important objective in building patient trust necessary for successful health outcomes. Little is known about patient understanding and expectations from medical confidentiality. Objective: To identify and describe patient views of medical confidentiality and to assess provisionally the range of these views. Design: Qualitative study using indepth, open ended face-to-face interviews. Setting: Southeastern Pennsylvania and southern New Jersey, USA. Participants: A total of 85 women interviewed at two clinical sites and three community/research centres. Main outcome measures: Subjects’ understanding of medical confidentiality, beliefs about the handling of confidential information and concerns influencing disclosure of information to doctors. Results: The subjects defined medical confidentiality as the expectation that something done or said would be kept "private" but differed on what information was confidential and the basis and methods for protecting information. Some considered all medical information as confidential and thought confidentiality protections functioned to limit its circulation to medical uses and reimbursement needs. Others defined only sensitive or potentially stigmatising information as confidential. Many of these also defined medical confidentiality as a strict limit prohibiting information release, although some noted that specific permission or urgent need could override this limit. Conclusions: Patients share a basic understanding of confidentiality as protection of information, but some might have expectations that are likely not met by current practice nor anticipated by doctors. Doctors should recognise that patients might have their own medical confidentiality models. They should address divergences from current practice and provide support to those who face emotional or practical obstacles to self-revelation.