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Biomedical subjects

Barbara A Koenig

Publications and source records attributed to Barbara A Koenig.

11 recordsLinked to original sources
PubMed2005

Nicotine addiction through a neurogenomic prism: ethics, public health, and smoking.

Studies are under way to examine the neurogenetic factors contributing to smoking behaviors. The combined approaches of genomics, molecular biology, neuroscience, and pharmacology are expected to fuel developments in pharmacogenetics, to create new genetic tests, and ultimately to provide the basis for innovative strategies for smoking cessation and prevention. The emergence of a neurogenomic understanding of nicotine addiction is likely to induce fundamental changes in popular, clinical, and public health views of smoking, which could significantly shape existing practices and policies to reduce tobacco use. Still a nascent area of research, nicotine addiction provides an excellent case study through which to anticipate key ethical and policy issues in both behavioral genetics and the neurogenomics of addictive behaviors.

Behavior, Addictive↗
PubMed2005

Motivations for physician-assisted suicide.

OBJECTIVE: To obtain detailed narrative accounts of patients' motivations for pursuing physician-assisted suicide (PAS). DESIGN: Longitudinal case studies. PARTICIPANTS: Sixty individuals discussed 35 cases. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. SETTING: Participants' homes. MEASUREMENTS AND RESULTS: We conducted a content analysis of 159 semistructured interviews with patients and their family members, and family members of deceased patients, to characterize the issues associated with pursuit of PAS. Most patients deliberated about PAS over considerable lengths of time with repeated assessments of the benefits and burdens of their current experience. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. CONCLUSIONS: Patients in this study engaged in PAS after a deliberative and thoughtful process. These motivating issues point to the importance of a broad approach in responding to a patient's request for PAS. The factors that motivate PAS can serve as an outline of issues to explore with patients about the far-reaching effects of illness, including the quality of the dying experience. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients' concerns over time, and tailoring care accordingly.

Acquired Immunodeficiency Syndrome↗
PubMed2003

Qualitative methods in end-of-life research: recommendations to enhance the protection of human subjects.

Qualitative research has the potential to contribute important new knowledge to care near the end of life, but research is often hampered by questions about how best to protect dying patients and their family members who serve as research subjects. Due to lack of familiarity with the techniques of ethnographic or observational research, as well as concerns about the vulnerability of the dying, members of Institutional Review Boards (IRBs) are often unable to evaluate the benefits and potential harms of studies. In addition, policies derived from standards based on interventional medical research or clinical trials may be applied inappropriately. We offer comprehensive recommendations aimed at improving the translation of human subjects guidelines into meaningful protections for subjects in qualitative studies, including education for IRBs. Policies must be flexible and should be guided by empirical findings documenting the actual impact of research participation, rather than a priori assumptions about patient vulnerability. Sensitive topics, such as drug use, may require added protections.

Ethics, Research↗
PubMed2003

Self-referred whole-body CT imaging: current implications for health care consumers.

PURPOSE: To conduct an empirical analysis of self-referred whole-body computed tomography (CT) and develop a profile of the geographic and demographic distribution of centers, types of services and modalities, costs, and procedures for reporting results. MATERIALS AND METHODS: An analysis was conducted of Web sites for imaging centers accepting self-referred patients identified by two widely used Internet search engines with large indexes. These Web sites were analyzed for geographic location, type of screening center, services, costs, and procedures for managing imaging results. Demographic data were extrapolated for analysis on the basis of center location. Descriptive statistics, such as frequencies, means, SDs, ranges, and CIs, were generated to describe the characteristics of the samples. Data were compared with national norms by using a distribution-free method for calculating a 95% CI (P <.05) for the median. RESULTS: Eighty-eight centers identified with the search methods were widely distributed across the United States, with a concentration on both coasts. Demographic analysis further situated them in areas of the country characterized by a population that consisted largely of European Americans (P <.05) and individuals of higher education (P <.05) and socioeconomic status (P <.05). Forty-seven centers offered whole-body screening; heart and lung examinations were most frequently offered. Procedures for reporting results were highly variable. CONCLUSION: The geographic distribution of the centers suggests target populations of educated health-conscious consumers who can assume high out-of-pocket costs. Guidelines developed from within the profession and further research are needed to ensure that benefits of these services outweigh risks to individuals and the health care system.

Humans↗
PubMed2002

Strategies for culturally effective end-of-life care.

As a result of profound worldwide demographic change, physicians will increasingly care for patients from cultural backgrounds other than their own. Differences in beliefs, values, and traditional health care practices are of particular relevance at the end of life. Health care providers and patients and families may not have shared understandings of the meaning of illness or death and may not agree on the best strategies to plan for the end of life or to alleviate pain and suffering. Good end-of-life care may be complicated by disagreements between physicians and patients, difficult interactions, or decisions the physician does not understand. Challenges may result from cultural differences between the patient's background and traditional medical practice. Values so ingrained in physicians as to be unquestioned may be alien to patients from different backgrounds. Physicians need to be sensitive to cultural differences and to develop the skills necessary to work with patients from diverse backgrounds. Community and cultural ties provide a source of great comfort as patients and families prepare for death. This paper describes two cases that raise issues about cross-cultural end-of-life practice and suggests strategies for negotiating common problems. Physicians should assess the cultural background of each patient and inquire about values that may affect care at the end of life. They should become aware of the specific beliefs and practices of the populations they serve, always remembering to inquire whether an individual patient adheres to these cultural beliefs. Attention to cultural difference enables the physician to provide comprehensive and compassionate palliative care at the end of life.

Advance Directives↗
PubMed2002

"Choice" in end-of-life decision making: researching fact or fiction?

PURPOSE: The contribution of bioethics to clinical care at the end of life (EOL) deserves critical scrutiny. We argue that researchers have rarely questioned the normative power of autonomy-based bioethics practices. Research on the ethical dimensions of EOL decision making has focused on an idealized discourse of patient "choice" that requires patients to embrace their dying to receive excellent palliative care. DESIGN AND METHODS: Our critique is based on a comprehensive review of empirical research exploring bioethics practices at the EOL. In addition we will provide a brief review of our own ethnographic, longitudinal study of the decision-making experience of dying patients, their families, and their health care providers. RESULTS: There is little or no empirical evidence to support the autonomy paradigm of patient "choice" in EOL decision making. What we found is that (a). prognostication at the EOL is problematic and resisted; (b). shared decision making is illusory, patients often resist advance care planning and hold other values more important than autonomy, and system characteristics are more determinative of EOL care than patient preferences; and (c). the incommensurability of medical and lay knowledge and values and the multifaceted and processual nature of patient and family decision making are at odds with the current EOL approach toward advance care planning. IMPLICATIONS: It is exceedingly difficult to identify, study, and critique normative assumptions without creating them, reproducing them, or obliterating them in the process. However, a fuller account of the morally significant domains of end-of-life care is needed. Researchers and policy makers should heed what we have learned from empirical research on EOL care to develop more sensitive and supportive programs for care of the dying.

Acquired Immunodeficiency Syndrome↗
PubMed1986

AIDS and ethics.

Explore the source record for details and available documents.

AIDS Serodiagnosis↗
PubMedDate not supplied

Advertising, patient decision making, and self-referral for computed tomographic and magnetic resonance imaging.

BACKGROUND: Self-referred imaging is one of the latest health care services to be marketed directly to consumers. Most aspects of these services are unregulated, and little is known about the messages in advertising used to attract potential consumers. We conducted a detailed analysis of print advertisements and informational brochures for self-referred imaging with respect to themes, content, accuracy, and emotional valence. METHODS: Forty print advertisements from US newspapers around the country and 20 informational brochures were analyzed by 2 independent raters according to 7 major themes: health care technology; emotion, empowerment, and assurance; incentives; limited supporting evidence; popular appeal; statistics; and images. The Fisher exact test was used to identify significant differences in information content. RESULTS: Both the advertisements and the brochures emphasized health care and technology information and provided assurances of good health and incentives to self-refer. These materials also encouraged consumers to seek further information from company resources; virtually none referred to noncomplying sources of information or to the risks of having a scan. Images of people commonly portrayed European Americans. We found statistical differences between newspaper advertisements and mailed brochures for references to "prevalence of disease" (P<.001), "death" (P<.003), and "radiation" (P<.001). Statements lacking clear scientific evidence were identified in 38% of the advertisements (n = 15) and 25% of the brochures (n = 5). CONCLUSIONS: Direct-to-consumer marketing of self-referred imaging services, in both print advertisements and informational brochures, fails to provide prospective consumers with comprehensive balanced information vital to informed autonomous decision making. Professional guidelines and oversight for advertising and promotion of these services are needed.

Advertising↗