The 15th Annual American Society for Bioethics and Humanities Meeting was held October 24-27, 2013, in Atlanta, GA. Several of our faculty members attended and presented on various topics.
“Autonomy’s Child: Exploring the Bounded Warp and Woof of Shared Decision-making”
By Elizabeth (Libby) Bogdan-Lovis and Karen Kelly-Blake
Shared decision-making is commonly cited as a clinical encounter ideal, yet current assessments suggest that multiple barriers impede its full implementation. To explore some of those barriers we examined obstacles to shared decision-making surrounding the place of birth, where the available clinical evidence on best practice is ambiguous. Disagreement over interpretation of the available evidence, presentation of the relevant information, maternal and fetal rights and responsibilities and physician rights and responsibilities commonly confound the interaction. This presentation examined shared decision-making complexities over who is, and who should be, the authorized decision maker for the mother-baby dyad when there is profound disagreement over interpretations of risks as well as determination of best interests. This presentation usefully highlighted difficulties in robust shared decision-making implementation.
“The e-portfolio as a teaching approach: fostering reflective thinking in interdisciplinary bioethics programs”
Poster by Monica List
Bioethics is arguably defined as an interdisciplinary field. However, how this interdisciplinarity is expressed in the teaching of bioethics depends strongly on the nature and purpose of each particular program. In 2012, the Specialization in Bioethics, Humanities, and Society (BHS) at Michigan State University launched a 1 credit, fully online e-portfolio course. One of the main objectives of the course was to provide BHS students with an opportunity to integrate, and critically reflect on, the knowledge and experiences gained through their specialization coursework. In this first offering of the e-portfolio course, 10 undergraduate students from 9 different majors conducted an analysis of the case of STD research in Guatemala from 1946 to 1948, using a study guide prepared by the Presidential Commission for the Study of Bioethical Issues. This experience provided valuable information on the benefits and shortfalls of using e-portfolios in interdisciplinary teaching and assessment in bioethics programs at the undergraduate level.
“Parsimonious Care: Penurious Promises or Just Prudence?”
By Leonard M. Fleck, Ph.D.
The American College of Physicians generated a small media firestorm with the 6th edition of their Physicians Ethics Manual wherein they recommended physicians should provide “parsimonious care” to their patients for reasons of both equity and efficiency. Some critics noted that parsimony carries the connotation of stinginess; other critics maintained that parsimonious care represented disloyalty to the best interests of patients.
Dr. Fleck defends the claim that parsimonious medical care is presumptively morally permissible if the following conditions are met: (1) We have limited resources to meet virtually unlimited health care needs. (2) As a society we are failing to meet numerous just claims to needed health care because we squander resources on the very well- insured. (3) Objective medical grounds exist for believing a specific intervention will likely yield little benefit. (4) Those objective medical grounds are captured in evidence-based, expert-derived practice protocols congruent with the core values of medicine. (5) The parsimonious practice protocols are public and transparent and legitimated through a process of rational democratic deliberation. (6) Savings achieved through parsimonious practices are captured and redistributed toward meeting higher priority health care needs. (7) High-cost patients are not discriminated against; instead their health care needs are met as efficiently as possible with effective health care interventions, even if those interventions are not cost-effective. The goal is not maximal parsimony but equitable parsimony.
“Stewardship Model of Biobanking: Ethical Challenges are Systems Challenges”
Poster by Ann Mongoven, Michigan State University and Stephanie Solomon, St. Louis University
Although there is currently great interest in increasing informed consent for biobanking, informed consent for biobanking is incoherent. Biobank recruits asked for biosamples cannot weigh risks and benefits of future unknown research. This poster argued that the use of advance directives and surrogate decision-makers in clinical medicine offers a model for biobanking ethics. Patients considering future unknown medical scenarios can express relevant values through advance directives, and appoint a surrogate decision-maker. In practice, advance directives are the most effective when they are neither too vague nor too specific, and when they focus on general values rather than specific treatment choices—like the popular “Five Wishes” advance directive. They are also more successful when they are reinforced systematically within a health system and community. Biobanks should develop an analogue of the “Five Wishes” that is neither too vague (blanket consent) nor too detailed (tiered consent), that stresses relevant values rather than specific research choices, and that is formed by and forming of community engagement to support the biobank’s de facto surrogate role.
“Biobank or Biotrust?: Metaphor and the Ethics of Biobanking”
Poster by Ann Mongoven
Metaphors are word-symbols that are partially formative of the moral world. Because non-literal, all metaphors highlight some aspects of the moral landscape while obscuring others. Common metaphors used in biobanking ethics are often used unreflectively: biobank; specimen; donor; etc. For example, while “bank” aptly signals a repository, “bank” is a commercial metaphor. It may not well capture potential public purposes of biobanking. “Donor” implies intent, but many biobank participants are unaware that their tissue has been banked or is being used in research. They may be more “conscript” than “donor.” Metaphorical analysis enables a two –way critique, exploring the relationship between the language used for biobanking and actual institutions or practices. The poster argues that many commonly-used metaphors for biobanking are ethically distorting; that we should experiment with other metaphors; and that given the complexity of this new enterprise we may need multiple metaphors to describe it and resist distortions.