What are my obligations to my incarcerated patient?

A 45-year-old man is brought to the emergency department with a self-inflicted forearm laceration. He is incarcerated and under the care of the Department of Corrections (DOC). The patient has a history of self-harm and iron deficiency anemia, and his baseline hemoglobin is 6 to 7 g/dL (reference range 13.

"The Hopkins Mongol Case": The Dawn of the Bioethics Movement.

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today.

Family and transplant professionals' views of organ recovery before circulatory death for imminently dying patients: A qualitative study using semistructured interviews and focus groups.

Donation before circulatory death for imminently dying patients has been proposed to address organ scarcity and harms of nondonation. To characterize stakeholder attitudes about organ recovery before circulatory death we conducted semistructured interviews with family members (N = 15) who had experienced a loved one's unsuccessful donation after circulatory death and focus groups with professional stakeholders (surgeons, anesthesiologists, critical care specialists, palliative care specialists, organ procurement personnel, and policymakers, N = 46). We then used qualitative content analysis to characterize these perspectives.

Potential yield of imminent death kidney donation.

About 99 000 people are waiting for a kidney in the United States, and many will die waiting. The concept of "imminent death" donation, a type of living donation, has been gaining attention among physicians, patients, and ethicists. We estimated the number of potential imminent death kidney donors at the University of Wisconsin Hospital and Clinics by assessing the number of annual deaths in individuals with normal kidney function.

Informed Consent Should Be a Required Element for Newborn Screening, Even for Disorders with High Benefit-Risk Ratios.

Over-enthusiastic newborn screening has often caused substantial harm and has been imposed on the public without adequate information on benefits and risks and without parental consent. This problem will become worse when genomic screening is implemented. For the past 40 years, there has been broad agreement about the criteria for ethically responsible screening, but the criteria have been systematically ignored by policy makers and practitioners.

Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations.

Objective: The completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients' medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point.

Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank.

The Personalized Medicine Research Project (PMRP) is a population-based biobank with more than 20,000 adult participants in central Wisconsin. A Community Advisory Group (CAG) and Ethics and Security Advisory Board (ESAB) provide ongoing feedback. In addition, the study newsletter is used as a two-way communication tool with study participants.

Ashley revisited: a response to the critics.

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns.

Growth-attenuation therapy: principles for practice.

Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for similarly affected children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children with profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed.

Childhood obesity and medical neglect.

The incidence of childhood obesity has increased dramatically, including severe childhood obesity and obesity-related comorbid conditions. Cases of severe childhood obesity have prompted the following question: does childhood obesity ever constitute medical neglect? In our opinion, removal of a child from the home is justified when all 3 of the following conditions are present: (1) a high likelihood that serious imminent harm will occur; (2) a reasonable likelihood that coercive state intervention will result in effective treatment; and (3) the absence of alternative options for addressing the problem. It is not the mere presence or degree of obesity but rather the presence of comorbid conditions that is critical for the determination of serious imminent harm.

Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project.

The purpose of this article is to describe community consultation and communication efforts for the Personalized Medicine Research Project (PMRP), a population-based biobank. A series of focus group discussions was held in the year preceding initial recruitment efforts with potentially eligible community residents and slightly less than a year after initial recruitment with eligible residents who had declined participation in PMRP. A Community Advisory Group, with 19 members reflecting the demographics of the eligible community, was formed and meets twice yearly to provide advice and feedback to the PMRP Principal Investigator and the local IRB.

Research ethics in the MySpace era.

Social networking web sites are popular among adolescents and may represent a new venue for conducting adolescent health research. Conducting research by using social networking web sites raises several concerns, including the social value of this research, fair subject selection, confidentiality, privacy, and informed consent. Addressing each of these concerns, we offer an ethical framework to promote informed and appropriate decisions.

An Institutional Review Board dilemma: responsible for safety monitoring but not in control.

Clinical trials have become a major research tool to evaluate new medical interventions. Most trials require some level of data monitoring for quality control and many trials require special monitoring for participant safety. For national multicenter trials, independent data monitoring committees have become the standard for monitoring for evidence of participant benefit or harm in trials with irreversible outcomes such as death or serious morbidity.