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Consenting to uncertainty: challenges for informed consent to disease screening--a case study.

This paper uses chronic beryllium disease as a case study to explore some of the challenges for decision-making and some of the problems for obtaining meaningful informed consent when the interpretation of screening results is complicated by their probabilistic nature and is clouded by empirical uncertainty. Although avoidance of further beryllium exposure might seem prudent for any individual whose test results suggest heightened disease risk, we will argue that such a clinical precautionary approach is likely to be a mistake. Instead, advice on the interpretation of screening results must fo

Selective abortion in Brazil: the anencephaly case.

This paper discusses the Brazilian Supreme Court ruling on the case of anencephaly. In Brazil, abortion is a crime against the life of a fetus, and selective abortion of non-viable fetuses is prohibited. Following a paradigmatic case discussed by the Brazilian Supreme Court in 2004, the use of abortion was authorized in the case of a fetus with anencephaly. The objective of this paper is to analyze the ethical arguments of the case, in particular the strategy of avoiding the moral status of the fetus, the cornerstone thesis of the Catholic Church.

Risk, medicine and women: a case study on prenatal genetic counselling in Brazil.

Genetic counselling is an important aspect of prenatal care in many developed countries. This tendency has also begun to emerge in Brazil, although few medical centres offer this service. Genetic counselling provides prenatal risk control through a process of individual decision-making based on medical information, in a context where diagnostic and therapeutic possibilities overlap. Detection of severe foetal anomalies can lead to a decision involving possible termination of pregnancy. This paper focuses on medical and legal consequences of the detection of severe foetal anomalies, mainly anen

Kidney transplants from young children and the mentally retarded.

Kidney donation by young children and the mentally retarded has been supported by court decisions, arguments based on obligations inherent in family relationships, an array of contextual factors, and the principle of beneficence. These justifications for taking organs from people who cannot protect themselves are problematic and must be weighed against our obligation to protect the vulnerable. A compromise solution is presented that strongly protects young children and the mentally retarded but does not abdicate all responsibility to relieve suffering. Guidelines are proposed that prohibit the

Rethinking the 'right not to know'.

The idea that an individual has a 'right not to know' genetic information about himself or herself is entrenched in both the policy sphere and the genetic counselling ethos. In this paper, I interrogate this idea of a 'right not to know', questioning particularly its status as a right. I identify the conception of rights that seems to underlie the posited 'right not to know' as a conception of rights in which they are prioritised non-outweighable interests. Turning to a series of hypothetical situations in which the 'right not to know' is invoked, I argue that the 'right not to know' is not a

Developing drugs for the developing world: an economic, legal, moral, and political dilemma.

This paper discusses the economic, legal, moral, and political difficulties in developing drugs for the developing world. It argues that large, global pharmaceutical companies have social responsibilities to the developing world, and that they may exercise these responsibilities by investing in research and development related to diseases that affect developing nations, offering discounts on drug prices, and initiating drug giveaways. However, these social responsibilities are not absolute requirements and may be balanced against other obligations and commitments in light of economic, social,

Constitutional values and HIV/AIDS in the workplace: reflections on Hoffman v. South African Airways.

South Africa is experiencing an HIV/AIDS epidemic of enormous proportions. The workplace, like all the other sectors, is adversely affected. The tendency of a significant proportion of employers has been to discriminate against employees and job applicants living with HIV/AIDS through the use of HIV testing to exclude those that are HIV-positive. In the case of Hoffman v South African Airways, the Constitutional Court was asked to determine the constitutionality of excluding a job applicant on account of an HIV-positive status. The Court ruled in favour of the applicant and ordered instatement

The burden of dementia. A medical and research perspective.

Alzheimer's disease remains the most common form of dementia. Dementia symptoms vary depending on individual personality, life experience, and social and cultural influences. As dementia progresses, involvement of multi-disciplinary health care professionals is needed to manage the disease. Alzheimer research is progressing rapidly. While 5% of all Alzheimer's disease may be genetically determined, the majority is not. Susceptibility genes can reveal the risk of contracting Alzheimer's disease. Early life risk factors such as education, nutrition, and vascular disease may increase the likeliho

Resuscitating Patient Rights during the Pandemic: COVID-19 and the Risk of Resurgent Paternalism.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate (DNR) orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights versus clinical discretion, warning about the risk of resurg

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… Indeed, the question of resuscitation during the pandemic brought me back to how I got into bioethics in the first place. Birth of a Bioethicist It was over 30 years ago, but I remember the night vividly. … I had not studied bioethics—indeed, I dropped out of a bioethics class while a student at Wesleyan—and it had not been part of the curriculum while I was a medical student at Cornell. …

Using Genomic Data in Personalized Oncology Medicine: An Exploratory Expert-Elicitation Study with Narrative Regulatory Mapping of Regulations, Implementations, and Challenges in Saudi Arabia.

BACKGROUND/OBJECTIVES: Personalized medicine represents a transformative approach to healthcare in Saudi Arabia. However, a significant research gap exists regarding the specific regulatory, implementation, and practical challenges of integrating genomic data into personalized oncology care in the Saudi context. We aimed to conduct an exploratory assessment of the current regulatory landscape, practices, and challenges related to genomic data use in personalized oncology in Saudi Arabia and to identify regulatory and practical gaps, propose actionable solutions, and outline future directions f

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… Expert ID | Area of Specialization | Years of Experience | Sex | Education Level | Sector | Role in Genomic Policy/Oncology Implementation SME-01 | Bioethics & compliance | +25 | Men | PhD in Biomedical Science PhD in Bioethics | Government | Involved in bioethics and compliance oversight, including … Clinical trials overseen by the SFDA must comply with bioethical regulations. However, no comprehensive consent framework for genomic testing currently exists. …

Provision of Appropriate Care as a Source of Clinician Distress.

Clinicians are dedicated to helping others, healing the sick, and protecting the healthy from becoming sick. Obviously, clinicians would prefer to help others without causing them any distress. But, appropriate care includes procedures and interventions that can cause pain, distress, and sometimes even suffering. Clinicians must therefore accept that they frequently have to cause their patients to experience pain and distress. Because patients' distress tends to be short-lived, the resulting distress on the treating clinicians is typically minimal. However, when provision of appropriate care r

Ambient Digital Scribes as Educational Mirrors: Closing the Feedback Gap in Physician Communication.

Healthcare systems are rapidly adopting ambient digital scribe (ADS) technologies to reduce documentation burden and improve efficiency in clinical care. Although these systems are typically framed as technical tools that listen to patient dialogue, they also capture physician speech, creating an underexplored opportunity for ethical and pedagogical innovation. At present, everyday patient-physician interactions largely occur without systematic reflection, producing a persistent 'feedback gap' in which deleterious communication often goes unnoticed. This paper argues for a reframing of ADS as