Randi Zlotnik Shaul

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Physician-researchers are bound by professional obligations stemming from both the role of the physician and the role of the researcher. Currently, the dominant models for understanding the relationship between physician-researchers' clinical duties and research duties fit into three categories: the similarity position, the difference position and the(More)
This paper provides a description of the role of the clinical ethicist as it is generally experienced in Canada. It examines the activities of Canadian ethicists working in healthcare institutions and the way in which their work incorporates more than ethics case consultation. The Canadian Bioethics Society established a "Taskforce on Working Conditions for(More)
The legal risks associated with health research involving human subjects have been highlighted recently by a number of lawsuits launched against those involved in conducting and evaluating the research. Some of these cases have been fully addressed by the legal system, resulting in judgments that provide some guidance. The vast majority of cases have either(More)
It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the(More)
Research involving critically ill persons highlights challenging questions surrounding third party authorization. The ethical and legal viability in research involving persons who do not have the capacity to consent to participation is not universally accepted, and inconsistent standards are reflected in research ethics guidelines, law and practice. In(More)
OBJECTIVES This study investigates current policies, key issues, and needs for pandemic planning in pediatrics in Canada. METHODS Online pandemic plans from national, provincial and territorial government websites were reviewed to identify: plans for children and families, and psychosocial and ethical issues. A survey was administered to gather(More)
OBJECTIVE To better understand the consequences of returning whole genome sequencing (WGS) results in paediatrics and facilitate its evidence-based clinical implementation, we studied parents' experiences with WGS and their preferences for the return of adult-onset secondary variants (SVs)-medically actionable genomic variants unrelated to their child's(More)
When considering expensive drug treatment for neonates and infants, how should we decide what we can and cannot afford? Accountably allocating health-care resources can be achieved using a framework that reflects the values a society considers so reflective of the collective will that they have been formally entrenched in law. The values and procedural(More)
Enzyme replacement therapy (ERT) is a newly approved disease-modifying treatment for hypophosphatasia (HPP), a rare metabolic bone disorder. With an orphan drug and ultra-rare disease, sharing information about responders and non-responders is particularly important, as any one centre's familiarity with its use will be limited. Nearly all published data in(More)
Recent articles have argued from principles of bioethics for the right of research subjects to receive the results of the studies in which they have participated. We argue that accountability is a powerful tool of meso-level analysis appropriate to reasoning about answerability in research ethics, and that it captures the responsibility of researchers to(More)