Retrospective Cohort Study on the Limitations of Direct-to-Consumer Genetic Screening in Hereditary Breast and Ovarian Cancer.

Purpose: Among cancer predisposition genes, most direct-to-consumer (DTC) genetic tests evaluate three Ashkenazi Jewish (AJ) founder mutations in , which represent a small proportion of pathogenic or likely pathogenic variants (PLPV) in cancer predisposing genes. In this study, we investigate PLPV in and other cancer predisposition genes that are missed by testing only AJ founder mutations.

Methods: Individuals were referred to genetic testing for personal diagnoses of breast and/or ovarian cancer (clinical cohort) or were self-referred (nonindication-based cohort).

Nurses as Disciplinary Agents of the State: Ethical Practice and Mandatory Reporting in the United States.

This article reviews legislative initiatives that mandate nurses to report patients, families, and clinicians to law enforcement. Most recently, these laws target transgender and gender diverse (TGD) youth and people seeking abortion. In this article, we examine the ethics of such laws through professional ethical codes.

Conspiracy theories and clinical decision-making.

When a patient's treatment decisions are the product of delusion, this is often taken as a paradigmatic case of undermined decisional capacity. That is to say, when a patient refuses treatment on the basis of beliefs that in no way reflect reality, clinicians and ethicists tend to agree that their refusal is not valid. During the COVID-19 pandemic, however, we have witnessed many patients refuse potentially life-saving interventions not based on delusion but on conspiracy beliefs.

Inequitable Access to Transplants: Adults With Impaired Decision-Making Capacity.

Inequitable access to deceased donor organs for transplantation has received considerable scrutiny in recent years. Emerging evidence suggests patients with impaired decision-making capacity (IDC) face inequitable access to transplantation. The "Ethical and Legal Issues" working group of the European Society of Transplantation undertook an expert consensus process.

Organ transplant and Covid-19 vaccination: Considering the ethics of denying transplant to unvaccinated patients.

Recently, a number of organ transplant centers in the United States have proposed to only allow patients who have received the Covid-19 vaccination to be active on their transplant waiting list. This raises numerous ethical issues. This analysis utilizes current empirical data and the guidelines on the ethics of organ allocation published by the Organ Procurement and Transplant Network to guide our ethical reasoning.

The significance of the distinction between "having a life" vs. "being alive" in end-of-life care.

In end-of-life care discussions, I contend that the distinction between "having a life" vs. "being alive" is an underutilized distinction. This distinction is significant in separating different states of existence conflated by patients, families, and clinicians.

Practical ethical challenges and moral distress among staff in a hospital COVID-19 screening service.

The COVID-19 pandemic has led to unprecedented disruptions to established models of healthcare and healthcare delivery, creating a host of new ethical challenges for healthcare institutions, their leadership and their staff. Hospitals and other large organisations have an obligation to understand and recognise the downstream effects that highly unusual situations and professionally demanding policy may have on workers tasked with its implementation, in order to institute risk-mitigation strategies and provide additional support where required. In our experience, targeted ethics-based forums that provide a non-confrontational platform to discuss and explore the ethical dilemmas that may have arisen have been well received, and can also serve as useful and immediate feedback mechanisms to managers and leadership.

SARS-CoV-2 Monoclonal Antibodies in Children: Ethical Considerations.

The use of monoclonal antibodies in children with certain conditions and at high risk for severe COVID-19 has been approved by the US Food and Drug Administration under the Emergency Use Authorization mechanism of the Federal Food, Drug, and Cosmetic Act. No data on the tolerability or efficacy of these therapies in persons <18 years of age are available; there is risk. Whether they will work is unknown, but they could.

Weekly Internal Ethical Case Discussions in an ICU-Results Based on 9 Years of Experience With a Highly Structured Approach.

Objectives: Various ethical challenges are prevalent in ICUs. In order to handle these problems, a highly structured internal ethical case discussion within the multiprofessional team was implemented in 2011 in a Swiss ICU and has been regularly practiced almost weekly until present. To explore the results of all ethical case discussions taking place in a general ICU and to discuss the outcomes of the patients.

Ethical Allocation of Proton Therapy and the Insurance Review Process.

Purpose: The purpose of this study was to delineate a scoring system to maximize the ethical allocation of proton beam therapy (PBT) and determine what factors are associated with receipt of PBT, including the role of specific insurance providers.

Methods And Materials: Our scoring system was developed in collaboration with a multidisciplinary panel of experts. Patients submitted for PBT consideration were assigned a score by committee at a weekly peer-reviewed session at a time when our center was operating at capacity.

Cognitive and affective outcomes of genetic counselling in the Netherlands at group and individual level: a personalized approach seems necessary.

We performed a large outcome study at group and individual level in which the goals of genetic counselling were operationalized into cognitive and affective outcomes: empowerment, perceived personal control and anxiety. We then examined which socio-demographic and clinical variables were associated with changes in these outcomes. Data came from 1479 counselees who completed questionnaires (GCOS-18, PPC and STAI) at three time points: before the start of genetic counselling, after the first consultation and after the results of genetic counselling were disclosed.

Genomic variant sharing: a position statement.

Sharing de-identified genetic variant data is essential for the practice of genomic medicine and is demonstrably beneficial to patients. Robust genetic diagnoses that inform medical management cannot be made accurately without reference to genetic test results from other patients, as well as population controls. Errors in this process can result in delayed, missed or erroneous diagnoses, leading to inappropriate or missed medical interventions for the patient and their family.

Patient-Centered Care and Autonomy: Shared Decision-Making in Practice and a Suggestion for Practical Application in the Critically Ill.

Decision-making for the hospitalized dying and critically ill is often characterized by an understanding of autonomy that leads to clinical care and outcomes that are antithetical to patients' preferences around suffering and quality of life. A better understanding of autonomy will facilitate the ultimate goal of a patient-centered approach and ensure compassionate, high-quality care that respects our patients' values. We reviewed the medical literature and our experiences through the ethics service, palliative care service, and critical care service of a large community teaching hospital.

Existing and Evolving Bioethical Dilemmas, Challenges, and Controversies in Vascularized Composite Allotransplantation: An International Perspective From the Brocher Bioethics Working Group.

Early results of hand and face transplants and other grafts such as those of uterus, penis, trachea, larynx, or abdominal wall have confirmed the potential for vascularized composite allotransplantation (VCA) to restore appearance, anatomy, function, independence, and social integration in patients suffering from devastating tissue deficits untreatable by conventional treatment options. Despite such promise, these novel and complex procedures face challenges and controversies that remain open to discussion and debate. Indeed, many barriers to clinical advancement and negative stakeholder perceptions still exist.

Reflecting on the Reasons Pros and Cons Coercive Measures for Patients in Psychiatric and Somatic Care: The Role of Clinical Ethics Consultation. A Pilot Study.

Coercive measures in patient care have come under criticism leading to implement guidelines dedicated to the reduction of coercion. This development of bringing to light clinical ethics support is hoped to serve as a means of building up awareness and potentially reducing the use of coercion. This study explores the specific features of ethics consultation (EC) while dealing with coercion.