Mary Terrell White

Making Responsible Decisions: An Interpretive Ethic for Genetic Decisionmaking

It is widely thought that genetic counselors should work with parents “nondirectively”: they should keep parents informed and support their decisions. But this view misconceives human decisionmaking by failing to recognize that value choices are constructed within and constrained by a community. Acknowledging that decisions involve interaction with and responsibility toward others leads to a “dialogical” model of counseling, in which genetic counselors may question and guide parents’ decisions.

Decision-Making Through Dialogue: Reconfiguring Autonomy in Genetic Counseling

Nondirective genetic counseling developed as a means of promoting informed and independent decision-making. To the extent that it minimizes risks of coercion, this counseling approach effectively respects client autonomy. However, it also permits clients to make partially informed, poorly reasoned or ethically questionable choices, and denies counselors a means of demonstrating accountability for the use of their services. These practical and ethical tensions result from an excessive focus on noncoercion while neglecting the contribution of adequate information and deliberative competence to autonomous decision-making. A counseling approach that emphasizes the role of deliberation may more reliably produce thoroughly reasoned decisions. In such an approach, characterized by dialogue, counselors are responsible for ensuring that decisions are fully informed and carefully deliberated. Counseling remains nonprescriptive, but in the course of discussion counselors may introduce unsolicited information and/or challenge what they believe are questionable choices. By this means clients can be better assured that the decisions they make are fully considered, while counselors demonstrate a limited degree of professional accountability.

Guidelines for IRB Review of International Collaborative Medical Research: A Proposal

he increase in the scope of international collaborative medical research involving human subjects is T raising the problem of whether and how to maintain Western ethical standards when research is conducted in countries with very different social and ethical values. Existing international ethical guidelines for research largely reflect Western concepts of human rights, focusing on the bioethical principles of respect for persons, beneficence, and justice. However, in countries and societies where these values are understood differently or are not expressed in local cultures and institutions, it may be impossible or of no practical value to insert them into the research setting. In the United States, individual informed consent is considered ethically imperative for research involving human subjects. However, this imperative may be difficult to instill in societies that define persons by their relations to others, and important decisions are commonly made by heads of households or group leaders rather than by individuals.’ The baseline economic and health care conditions in foreign communities may also create ethical conflicts. In a study of acquired immune deficiency syndrome (AIDS) conducted in Tanzania, Western researchers were required by their institutions to include in their protocol that subjects be informed whether they had the human immunodeficiency virus (HIV). But because the country lacked resources even for palliative care, local Tanzanian officials prohibited disclosure of subjects’ HIV status out of concern for the distress that the information would cause.2More recently, studies of maternal-infant transmission of HIV resulted in a dispute over whether it is acceptable to use placebo controls in drug trials when effective treatments are known but are too expensive to be used as the standard

Making Sense of Genetic Uncertainty: The Role of Religion and Spirituality

This article argues that to the extent that religious and spiritual beliefs can help people cope with genetic uncertainty, a limited spiritual assessment may be appropriate in genetic counseling. The article opens by establishing why genetic information is inherently uncertain and why this uncertainty can be medically, morally, and spiritually problematic. This is followed by a review of the range of factors that can contribute to risk assessments, including a few heuristics commonly used in responses to uncertainty. The next two sections summarize recent research on the diverse roles of religious and spiritual beliefs in genetic decisions and challenges to conducting spiritual assessments in genetic counseling. Based on these findings, religious and spiritual beliefs are posited as serving essentially as a heuristic that some people will utilize in responding to their genetic risks. In the interests of helping such clients make informed decisions, a limited spiritual assessment is recommended and described. Some of the challenges and risks associated with this limited assessment are discussed. Since some religious and spiritual beliefs can conflict with the values of medicine, some decisions will remain problematic.

Perceptions of Factors Contributing to Professional Identity Development and Specialty Choice: A Survey of Third- and Fourth-Year Medical Students

This study begins to explore whether there is a link between medical students’ professional identity development and their specialty choice. Through an online survey, third- and fourth-year students at a US medical school were asked to identify the curricular, extracurricular, and personal experiences they felt influenced their professional identity development, and which of nine known considerations influenced their specialty choice. In 141 responses (68% return rate), students most frequently identified experiences involving humans — as cadavers, patients, colleagues, mentors, and role models — as contributing to their professional identity development. Of the nine contributors to specialty decisions, students highlighted intellectual interest, patient contact, procedural skills, lifestyle, and career opportunities. Narrative responses to both questions consistently emphasized the value of emotionally positive clerkship experiences, patient encounters, role models, and mentors. The abundance and consistency of these responses suggest that positive interpersonal and clinical experiences may influence both professional identity development and specialty choice.

Developing ethical awareness in global health: four cases for medical educators.

In recent years, the growth of interest in global health among medical students and residents has led to an abundance of short-term training opportunities in low-resource environments. Given the disparities in resources, needs and expectations between visitors and their hosts, these experiences can raise complex ethical concerns. Recent calls for best practices and ethical guidelines indicate a need for the development of ethical awareness among medical trainees, their sponsoring and host institutions, and supervising faculty. As a teaching tool to promote this awareness, we developed a scenario that captures many common ethical issues from four different perspectives. Each perspective is presented in case format followed by questions. Taken together, the four cases may be used to identify many of the elements of a well-designed global health training experience.

A Right to Benefit from International Research: A New Approach to Capacity Building in Less-Developed Countries

This article proposes a means by which benefits provided in international research collaborations might be employed to strengthen health care, research, and other capacities in less-developed countries. The Declaration of Helsinki and CIOMS Guidelines define certain expectations of benefits, but these requirements are ambiguous, logistically problematic, and studies suggest they are inconsistently upheld. Drawing on the principle of respect for persons, a right to benefit from hosting externally-sponsored research is proposed. This right guarantees host communities benefits of a certain value, the nature and use of which is controlled by indigenous personnel. Suggestions are made as to how implementation of this right, using structured incentives, may systematically promote capacity building in host communities.

Fibromyalgia: A Feminist Biopsychosocial Perspective

Abstract Fibromyalgia (FM) is a syndrome predominantly experienced by women and characterized by pain, fatigue, sleep disturbance, and multiple tender points at distinct locations on the body. Because of its prevalence and the common comorbidity of FM with depression and other conditions that prompt sufferers to seek psychological care, it is incumbent upon psychologists to be familiar with the syndrome, competent to provide assistance to afflicted individuals, and aware of the impact of gender politics on fibromyalgia sufferers. We present an overview of the diagnosis and treatment of fibromyalgia, a brief summary of etiological possibilities, and a discussion of the experience of illness among affected individuals. We conclude by exploring the social construction of the syndrome from a feminist perspective.

Essential competencies in global health research for medical trainees: A narrative review

Abstract Introduction: Participation in short-term educational experiences in global health (STEGHs) among medical trainees is increasingly accompanied by interest in conducting research while abroad. Because formal training in both global health and research methods is currently under-represented in most medical curricula, trainees are often unfamiliar with the knowledge, attitudes, and skills necessary to design and conduct research successfully. This narrative review identifies essential global health research competencies for medical trainees engaged in STEGHs. Methods: The authors searched the literature using the terms global health, competency, research, research methods/process/training, scholarly project, medical student, and medical education/education. Because articles directly addressing global health research competencies for medical trainees were limited, the authors additionally drew on the broader literature addressing general research competencies and global health competencies. Findings: Articles yielded by the literature search, combined with established guidelines in research ethics and global health ethics, were used to identify six core domains and twenty discrete competencies fundamental to global health research at a level appropriate for medical trainees enrolled in STEGHs. Consideration was given to diverse research modalities, varying levels of training, and the availability of mentoring and on-site support. Discussion: Research may provide important benefits to medical trainees and host partners. These competencies provide a starting point; however, circumstances at any host site may necessitate additional competencies specific to that setting. These competencies are also limited by the methodology employed in their development and the need for additional perspectives from host partners. Conclusions: The competencies identified outline basic knowledge, attitudes, and skills necessary for medical trainees to conduct limited global health research while participating in STEGHS. They may also be used as a basis for curriculum development, assessment, and research capacity development.

Why Not Medical Humanities

My decision to study medical humanities evolved from an academic background in biology and religious studies as well as a few volunteer experiences in healthcare advocacy. After exploring several programs, I chose to attend the University of Texas Medical Branch at Galveston (UTMB), which offers a doctoral program in medical humanities through its Institute for the Medical Humanities (IMH). The IMH is an academic research center within the Graduate School of Biomedical Sciences, comprising ten fulltime faculty. I was primarily attracted by the breadth of disciplines represented by the faculty; however, the generous stipend provided by the Institute was not insigniacant. In my day the medical humanities program encompassed studies in history, literature, philosophy, religion, law, ethics, and visual arts. Students were expected to take courses in all of these areas and complete a number of clinical practica. The classes were small. Some provided a solid introduction to a humanistic discipline in the context of medicine; others allowed for a focused exploration of particular topics. Independent studies were also an option. Of particular value to me was the medical environment. UTMB is a large, tertiary care center with seven hospitals, a large research agenda, and schools of medicine, nursing, and allied health, in addition to the Graduate School of Biomedical Sciences and the IMH. The Institute is centrally located on the medical campus, making it easy to attend rounds or ethics consults or to shadow individual clinicians. Total immersion in the culture of medicine was inescapable and a very important part of my education. Upon receiving my Ph.D. in 1995 and then accepted a position teaching ethics and medical humanities at Wright State University School of Medicine in Dayton, Ohio. As in most medical schools, I found medical students pragmatically oriented, little interested in mastering concepts that were not immediately applicable. Philosophy holds minimal (if any) interest for them, history and literature only slightly more. Were I to satisfy their demands for clarity and applicability, I would probably spend most of my time teaching jurisprudence. But to the extent that our job is to teach students skills of empathy, insight, and discernment, the medical humanities provides a highly useful and oexible range of tools and approaches. I toss a little history into most of my teaching for purposes of context; urge students to explore the existential questions—why do we live, suffer, and die—as circumstances warrant; use patients, literature, and alms to elicit empathy and analyze communication; and keep discussions of ethical theory as user-friendly as possible. I have found that putting a human face on any issue makes it memorable and meaningful to students. It is for this reason, if no other, that the medical humanities have a rightful place in medical education. In terms of research and scholarship, UTMB’s graduate program in medical humanities provided a breadth of perspectives that have each proved valuable. Although a graduate of such a program at times wonders what kind of hat to call his or her own, my research and publications are not limited to any particular discipline or approach. In this way the medical humanities can promote a kind of intellectual freedom that is not available to those schooled in a single discipline. When I began teaching medical students, I felt the primary weakness of my graduate training was that I had not spent enough time with the kinds of practical clinical information my students demanded. A gap like this is bound to be part of any learning curve in a new position and was not a serious problem, but I am told the current curriculum at the IMH includes more attention to clinical ethics. Nonetheless, I would caution students against this program if they do not come to it with a sense of direction and identity—either by having already completed some kind of graduate work or by having had signiacant clinical experience. Absent either of these, the medical humanities might appear to lack a disciplinary core, and graduates might wonder what they really know or are qualiaed to do. I am a fervent believer in the value of medical humanities as a source of insight into the social and institutional practices of medicine. If the medical humanities can be called a aeld, its strength lies in the breadth, innovation, and iconoclasm of its scholarship. Philosophical analysis can offer rigor and depth of focus, but the scope of vision is often narrow. We need both approaches if we are to have any hope of contributing positively to the challenges we face in healthcare today. ■