Browse Items · Pediatric Palliative Care Library

NHPCO Task Force Statement on the Ethics of Hospice Participation in Research

There is an urgent need for robust empirical data to guide the assessment and treatment of patients near the end of life. Because they are important providers of end-of-life care in this country, hospices have an important role to play in…

Research in children: ethical and scientific aspects

Termination of nutrition and hydration in a child with vegetative state

A child in a vegetative state may present difficult decisions for physicians and families regarding the course of treatment. We report a case of a child who entered a prolonged vegetative state following status epilepticus. The child's parents…

Human research ethics committees: issues in palliative care research

Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful…

Palliative care research protocols: a special case for ethical review?

Between October 2001 and May 2002 the Chairperson and Vice-Chairperson of each Multicentre Research Ethics Committee (MREC) in England, Wales and Scotland took part in a semi-structured interview to ascertain the attitudes of MRECs to palliative care…

Tags: 2003, Ahmedzai SH, Attitude Of Health Personnel, Backlog, Biomedical Research/ethics, Ethics Committees, Humans, Journal Article, Multi-site Ethics, Multicenter Studies as Topic, Palliative Care/ethics, Palliative Medicine, Paz S, Rawson A, Research, Stevens T, Wilde D, Wragg D

Research ethics committees and paternalism

In this paper the authors argue that research ethics committees (RECs) should not be paternalistic by rejecting research that poses risk to people competent to decide for themselves. However it is important they help to ensure valid consent is sought…

Tags: 2004, Altruism, Backlog, Biomedical and Behavioral Research, Edwards SJ, Ethics Committees, Humans, Huxtable R, Informed Consent, Journal Article, Journal of Medical Ethics, Kirchin S, Mental Competency, Moral Obligations, Paternalism, Research, Risk Assessment

A survey of IRB process in 68 U.S. hospitals

PURPOSE: To compare IRB processes in 68 U.S. hospitals for the same multicenter study. DESIGN: Survey of IRB processes in 68 U.S. hospitals during 2001-2002. METHODS: Requirements of IRB submission including type and duration of review and…

The ethics of end-of-life research

A notable and welcome increase in palliative care research has led to a multitude of ethical issues and concerns for researchers, clinicians, patients (subjects) and their family members (who also might be subjects), granting agencies, and…

Tags: 2004, Backlog, Clinical Trials/ethics, Decision Making/ethics, Ethics, Ethics Committees, Fine PG, Human Experimentation/ethics, Humans, Journal Article, Journal of Pain and Palliative Care Pharmacotherapy, National Institutes of Health (U.S.), Palliative Care/ethics, Practice Guidelines, Qualitative Research, Research, Research Design, Terminal Care/ethics, United States

Problematic variation in local institutional review of a multicenter genetic epidemiology study

CONTEXT: Sequencing of the human genome provides an immense resource for studies correlating DNA variation and epidemiology. However, appropriately powered genetic epidemiology studies often require recruitment from multiple sites. OBJECTIVES: To…

Issues of patient consent: a study of paediatric high-dependency care

This article reports on the issues relating to obtaining informed, signed consent for a study of paediatric high-dependency care and provides practical guidance on confidentiality for health service researchers. Consent and confidentiality are not…

Impact of institutional review board practice variation on observational health services research

OBJECTIVE: To describe, qualitatively and quantitatively, the impact of a review by multiple institutional review boards (IRBs) on the conduct of a multisite observational health services research study. DATA SOURCE AND SETTING: Primary data…

Tags: 2006, Backlog, Ethics Committees, Green LA, Health Services Research, Health Services Research/methods, Journal Article, Kowalski CP, Lowery JC, Multi-site Ethics, Qualitative Research, Research/organization & administration, United States, United States Department of Veterans Affairs, Wyszewianski L

Institutional review boards and multisite studies in health services research: is there a better way?

OBJECTIVE: The following paper examines the issue of whether the current system for ethics review of multisite health services research protocols is adequate, or whether there exist alternative methods that should be considered. PRINCIPAL FINDINGS:…

Tags: 2005, Backlog, Biomedical and Behavioral Research, Dewa CS, Efficiency, Ethics Committees, Gold JL, Health Services Research, Health Services Research/ethics, Humans, Journal Article, Multi-site Ethics, Multicenter Studies as Topic/ethics, Organizational, Reference Standards, Research/organization & administration

Variations among Institutional Review Board reviews in a multisite health services research study

OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively…

Variation in Institutional Review processes for a multisite observational study

BACKGROUND: The Veterans Administration is an ideal setting for multisite studies; however, individual VA Institutional Review Board (IRB) approval is necessary. This study examines the burden of multisite IRB approval on a Health Services Research…

Clinical research ethics for critically ill patients: a pandemic proposal

Pandemic H1N1 influenza is projected to be unprecedented in its scope, causing acute critical illness among thousands of young otherwise healthy adults, who will need advanced life support. Rigorous, relevant, timely, and ethical clinical and health…

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

Medical ethics in pediatric critical care

Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital…

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to…

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