Faculty Bibliography

Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome believe that high abortion rates following a diagnosis of this condition show an unfounded bias against those with Down syndrome. These advocates have succeeded in enacting federal and state legislation that requires women who receive a prenatal diagnosis of Down syndrome to receive positive information about the condition, thereby ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.

BACKGROUND: Unilateral Do-Not-Resuscitate (DNR) orders (against patient/family wishes) have been ethically justified in cases of medical futility. We investigated whether electrophysiology practitioners believe medical futility justifies unilateral ICD deactivation. METHODS AND RESULTS: Email invitations to take an online survey were sent to 1,894 EP practitioners. 384 responses were collected (response rate 20.6%). Though the sample included respondents from Europe, Asia, Australia, South American and Africa, the majority were from North American (78%), were academically affiliated (64%) and practiced in an urban setting (67.8%). Deactivation of ICD shock function in agreement with patient wishes and a pre-existing DNR was not considered physician assisted suicide (93.2%, 358/384). However, a majority of the sample responded that it was not ethical/moral for doctors to deactivate ICDs against patients' wishes (77.1%, 296/384) or against family/surrogates' wishes (72.4%, 278/384), even in the context of medical futility. A majority indicated that deactivating ICD shock function is not ethically/morally different than withholding CPR or external defibrillation in a code (72.7%, 277/381) but was different than deactivating pacing in a pacemaker-dependent patient (82.8%, 318/384). In the classification of interventions, a plurality (43.0%, 165/383) regarded ICD's to be unlike any other intervention. Concerning pacemakers, 50% (191/382) considered them to be like dialysis (a therapy which keeps patients alive). CONCLUSIONS: This international sample of electrophysiology practitioners considered ICD and pacemaker deactivation to be ethically distinct. While ICD deactivation was considered appropriate in the setting of patient/family agreement, unilateral deactivation was not

Preparticipation screening for unsuspected cardiovascular disease is a controversial topic in the medical and lay communities. Much attention has been directed towards young competitive athletes, particularly the proposed strategy of incorporating 12-lead electrocardiograms into the screening process, even on a national or worldwide basis. However, sudden deaths of young athletes owing to genetic or congenital heart diseases have a low incidence in the general population. Furthermore, young people not engaged in competitive sports can harbour the same conditions that cause sudden death in athletes, which has gone largely unrecognized. Notably, sudden deaths from these diseases are numerically far more common in the much larger population of nonathletes. In this Perspectives article, we propose that an ethical dilemma has emerged, raising the important public-health issue of whether young individuals should be arbitrarily excluded from potentially life-saving clinical screening evaluations because they do not engage in competitive sports programmes.

Patient access to experimental drugs outside of clinical trials is called compassionate use or expanded access. Compassionate use/expanded access presents a powerful ethical dilemma in that it involves competing claims that both have moral weight: specifically, an individual patient's very understandable desire to try to extend his or her life versus the orderly and efficient functioning of a drug development and clinical trial system that benefits much larger numbers of patients. Patient advocates, the FDA, pharmaceutical trade groups, and state and national legislators in the US are all currently weighing in on patient access to experimental drugs, and new guidelines and rules are being introduced. In this editorial, we discuss the impulse to rescue individual patients facing dire diseases and underscore the ethical questions that such rescue efforts raise.

Recent instances of governments and others refusing humanitarian assistance to refugees and IDPs (internally-displaced persons) unless they agreed to polio immunization for their children raise difficult ethical challenges. The authors argue that states have the right and a responsibility to require such vaccinations in instances where the serious vaccine-preventable disease(s) at issue threaten others, including local populations, humanitarian workers, and others in camps or support settings.