Janet Malek

The essential role of medical ethics education in achieving professionalism: the Romanell Report.

This article—the Romanell Report—offers an analysis of the current state of medical ethics education in the United States, focusing in particular on its essential role in cultivating professionalism among medical learners. Education in ethics has become an integral part of medical education and training over the past three decades and has received particular attention in recent years because of the increasing emphasis placed on professional formation by accrediting bodies such as the Liaison Committee on Medical Education and the Accreditation Council for Graduate Medical Education. Yet, despite the development of standards, milestones, and competencies related to professionalism, there is no consensus about the specific goals of medical ethics education, the essential knowledge and skills expected of learners, the best pedagogical methods and processes for implementation, and optimal strategies for assessment. Moreover, the quality, extent, and focus of medical ethics instruction vary, particularly at the graduate medical education level. Although variation in methods of instruction and assessment may be appropriate, ultimately medical ethics education must address the overarching articulated expectations of the major accrediting organizations. With the aim of aiding medical ethics educators in meeting these expectations, the Romanell Report describes current practices in ethics education and offers guidance in several areas: educational goals and objectives, teaching methods, assessment strategies, and other challenges and opportunities (including course structure and faculty development). The report concludes by proposing an agenda for future research.

The Case for a Parental Duty to Use Preimplantation Genetic Diagnosis for Medical Benefit

This article explores the possibility that there is a parental duty to use preimplantation genetic diagnosis (PGD) for the medical benefit of future children. Using one genetic disorder as a paradigmatic example, we find that such a duty can be supported in some situations on both ethical and legal grounds. Our analysis shows that an ethical case in favor of this position can be made when potential parents are aware that a possible future child is at substantial risk of inheriting a serious genetic condition. We further argue that a legal case for a duty to use PGD for medical benefit can be made in situations in which potential parents have chosen to conceive through in vitro fertilization and know that any children conceived are at substantial risk of having a serious genetic condition.

To Tell or Not to Tell? The Ethical Dilemma of the Would-Be Whistleblower

Despite the growing emphasis placed on the responsible conduct of research, little attention has been devoted to the question of what an individual should do upon discovering research misconduct. This article takes seriously the dilemma of a would-be whistleblower. It identifies ethical considerations that can be taken into account in moral decision-making about reporting research misconduct. It also offers rough guidelines about the moral significance of each consideration in the decision-making process based on the facts of the case in question. The article, therefore, offers tools for a would-be whistleblower to use to arrive at a defensible resolution to a difficult dilemma.

Understanding Risks and Benefits in Research on Reproductive Genetic Technologies

Research protocols must have a reasonable balance of risks and anticipated benefits to be ethically and legally acceptable. This article explores three characteristics of research on reproductive genetic technologies that complicate the assessment of the risk-benefit ratio for such research. First, a number of different people may be affected by a research protocol, raising the question of who should be considered to be the subject of reproductive genetic research. Second, such research could involve a wide range of possible harms and benefits, making the evaluation and comparison of those harms and benefits a challenging task. Finally, the risk-benefit ratio for this type of research is difficult to estimate because such research can have unpredictable, long-term implications. The article aims to facilitate the assessment of risk-benefit ratios in research on reproductive genetic technologies by proposing and defending some guidelines for dealing with each of these complicating factors.

Parental Perspectives on Whole-Exome Sequencing in Pediatric Cancer: A Typology of Perceived Utility

Purpose To explore how parents of pediatric cancer patients perceived the utility of clinical tumor and germline whole-exome sequencing (WES) results. Patients and Methods We conducted longitudinal interviews with parents of a diverse pediatric cancer population before disclosure of WES results (n=64), then one to eight months (n=33) after disclosure. Interview transcripts were analyzed using a thematic qualitative approach. Results Parents identified a broad range of types of utility for their childs WES results. Even when results did not affect their childs current treatment, they expressed optimism about future clinical utility for their child, themselves, and other family members. Parents also reported experiencing psychological utility including peace of mind, relief of guilt, and satisfaction of curiosity. Pragmatic utility, such as the ability to plan for the future and make better reproductive decisions, was also described. Conclusion Parents of pediatric cancer patients perceive WES to have broad utility, including psychological and pragmatic utility, even if there is no direct impact on clinical care. Further work will need to consider how the value of genomic information should be characterized, how risks and benefits should be described, and how these results should inform recommendations and decisions about using WES.

Maternal Decision-making During Pregnancy: Parental Obligations and Cultural Differences

Decision-making during pregnancy can be ethically complex. This paper offers a framework for maternal decision-making and clinical counseling that can be used to approach such decisions in a systematic way. Three fundamental questions are addressed: (1) Who should make decisions? (2) How should decisions be made? and (3) What is the role of the clinician? The proposed framework emphasizes the decisional authority of the pregnant woman. It draws ethical support from the concept of a good parent and the requirements of parental obligations. It also describes appropriate counseling methods for clinicians in light of those parental obligations. Finally, the paper addresses how cultural differences may shape the frameworks guidance of maternal decision-making during pregnancy.

Parental Obligations Regarding Fetal Risk: Finding the Appropriate Analogy

Howard Minkoff and Mary Faith Marshall take on important questions at the intersection of maternal decisionmaking and fetal exposure to risk in their “Fetal Risks, Relative Risks, and Relatives’ Risks” (Minkoff and Marshall 2016). Specifically, they seek to refute the claim that pregnant women’s behavior may be constrained to prevent fetal risk. Although Minkoff and Marshall’s interpretation of this claim may be extreme in that they assume that any activity causing increased risk would be prohibited under such a view, the key arguments in their piece can also be applied to a more moderate interpretation and so merit serious consideration nonetheless. Minkoff and Marshall deploy various analogies to make their argument that the relationship between a pregnant woman and her fetus does not require a pregnant woman to act (or abstain from acting) in particular ways to avoid incremental fetal risk. However, the way in which these analogies are used is problematic, compromising the soundness of the authors’ reasoning. The authors first consider “duty-to-rescue” scenarios, citing legal precedent from various jurisdictions refuting the existence of such a duty. The reference to such cases presumably is intended to demonstrate that if a person cannot be compelled to rescue an individual in danger of death or serious harm, a person certainly cannot be compelled to make choices to protect an individual from lesser risks. However, rescue contexts are not morally equivalent to standard cases of pregnancy. Paradigmatic duty-to-rescue cases involve an innocent bystander, put in the position of deciding whether to be a “splendid Samaritan” and offer assistance to a vulnerable individual in a situation she is otherwise unrelated to. In contrast, a pregnant woman is integrally involved with the situation that puts a fetus at risk. By allowing conception and permitting the continued development of a fetus, a pregnant woman makes choices that bring about the fetus’s vulnerability to harm. Unlike the defendants in the cases cited by Minkoff and Marshall, she causes the circumstances that put a fetus at risk. The existence of a causal relationship between one individual and another’s risk of harm is clearly morally significant. The key role of this variable is even noted in the judicial opinion in one case cited by the authors, Yania v. Bigan, in which the judge stated, “The mere fact that Bigan saw Yania in a position of peril in the water imposed upon him no legal, although a moral, obligation or duty to go to his rescue unless Bigan was legally responsible, in whole or in part, for placing Yania in the perilous position” (Yania v. Bigan 1959, italics added). It is not ethically or legally controversial to claim that (under normal circumstances) an individual bears responsibility for foreseeable downstream effects of his own voluntary choices but does necessarily bear the same responsibility for the choices of others. Because there is a causal connection between a pregnant woman and the vulnerability of her fetus that is not present between a typical rescuer and victim, there is a morally relevant difference between these two types of cases. As a result, the fact that most jurisdictions do not recognize a duty to rescue is not informative about justifications for constraining maternal behavior to prevent harm to a fetus. To their credit, Minkoff and Marshall address a second important difference between typical duty-to-rescue scenarios and cases involving pregnant women: the nature of the relationship that exists between a pregnant woman and her fetus. In this discussion, they state that the legal picture may be different when an individual is in a position to rescue her own child rather than a stranger, acknowledging that a duty to rescue or to prevent harm may exist in such cases. Minkoff and Marshall then aim to undermine the use of this parent–child analogy in the maternal–fetal case by questioning whether duties that apply to children apply to fetuses as well.

No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction

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Conscientious Nondisclosure and the Savior Sibling Debate: Does Moral Justification for Nondisclosure Matter?

In cases in which a suitable donor cannot be found for a child in need of a stem cell transplant, parents of that sick child may have the option to use in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) to bring another child into existence who could serve as a donor. In “It’s Time to Reframe the Savior Sibling Debate,” Strong, Jordens, Kerridge, Little, and Ankeny (2011) report the results of interviews with health professionals and parents about the practice of creating such “savior siblings.” The interviews revealed that the health professionals who participated in the study do not generally raise the option of using PGD to create a suitable donor with parents of a sick child. Further, the authors report that the clinicians interviewed identified a number of ethical concerns about the use of this technology as reasons for not disclosing this alternative. The authors critique the ethical reasons for nondisclosure offered by clinicians and argue that none can withstand scrutiny. They then conclude that failing to inform parents about the option of creating a savior sibling is morally problematic because the clinicians’ ethical reasons for withholding this information are not justifiable. In other words, clinicians’ conscientious objection to disclosure of this alternative is not defensible because the reasons offered by clinicians are not good reasons. Thus, they suggest, the focus of the debate over savior siblings should shift: The debate about the morality of the use of this technology should be reframed as a critique of clinicians who fail to disclose the alternative of creating a savior sibling when doing so could save the life of a sick child. This argument raises a thought-provoking question about conscientious objection: Does it matter whether the ethical reasons grounding the objection are justifiable? The structure of the paper makes it clear that Strong and colleagues believe that it does, even though an argument in support of this position is not laid out. However, a strong case can be made that the opposite is, in fact, true. That is, the extent to which a clinician’s ethical reasons for con-