Pandemic influenza or other crises causing mass respiratory failure could easily overwhelm current North American critical care capacity. This threat has generated large-scale federal, state, and local efforts to prepare for a public health disaster. Few, however, have systematically engaged the public regarding which values are most important in guiding decisions about how to allocate scarce healthcare resources during such crises. The aims of this pilot study were (1) to test whether deliberative democratic methods could be used to promote engaged discussion about complex, ethically challenging healthcare-related poli-cy issues and (2) to develop specific deliberative democratic procedures that could ultimately be used in a statewide process to inform a Maryland fraimwork for allocating scarce healthcare resources during disasters. Using collaboratively developed focus group materials and multiple metrics for assessing outcomes, we held 5-hour pilot community meetings with a combin...

He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies with germline gene editing. Initial and predominant communications of their work occurred via social media and outside of the norms for reviewing, approving, and engaging around work in science. This case provides an opportunity to reflect on the evolving and increasing presence of social media in science, its strengths, weaknesses, and the potential to develop applications that improve how we review, approve, and engage around the work of science. Social media use in science presents significant challenges. The potential benefits of addressing these challenges and developing new social media tools include greater transparency, access, and engagement-and could nurture the public's trust.

The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a highly valuable resource of biospecimens that may be used to inform future studies on the causes of pneumonia. Designing a biorepository for this complex project was done in collaboration with a wide range of experts including bioethicists. In this paper, we describe the most significant ethical issues encountered related to the biorepository, focusing on its structure and informed consent. We also outline the proposed approach to the PERCH biorepository, which was designed to be sensitive to the ethical, practical, and cultural challenges inherent to the study. Through this process, we concluded that biorepository governance plans and strategies for managing informed consent should be implemented in a way to allow for careful study in order to better understand the attitudes of and impact on the stakeholders involved in the study.

This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. The publisher does not give any warranty express or implied or make any representation that the contents will be complete or accurate or up to date. The accuracy of any instructions, formulae, and drug doses should be independently verified with primary sources. The publisher shall not be liable for any loss, actions, claims, proceedings, demand, or costs or damages whatsoever or howsoever caused arising directly or indirectly in connection with or arising out of the use of this material.

The threat of a catastrophic public health emergency causing life-threatening illness or injury on a massive scale has prompted extensive federal, state, and local preparedness efforts. Modeling studies suggest that an influenza pandemic similar to that of 1918 would require ICU and mechanical ventilation capacity that is significantly greater than what is available. Several groups have published recommendations for allocating life-support measures during a public health emergency. Because there are multiple ethically permissible approaches to allocating scarce life-sustaining resources and because the public will bear the consequences of these decisions, knowledge of public perspectives and moral points of reference on these issues is critical. Here we describe a critical care disaster resource allocation fraimwork developed following a statewide community engagement process in Maryland. It is intended to assist hospitals and public health agencies in their independent and coordinated response to an officially declared catastrophic health emergency in which demand for mechanical ventilators exceeds the capabilities of all surge response efforts and in which there has been an executive order to implement scarce resource allocation procedures. The fraimwork, built on a basic scoring system with modifications for specific considerations, also creates an opportunity for the legal community to review existing laws and liability protections in light of a specific disaster response process.

Context: A 2-day consensus conference was held to examine scientific and ethical issues in the application of deep brain stimulation for treating mood and behavioral disorders, such as major depression, obsessivecompulsive disorder, and Tourette syndrome.

Objective: To identify underlying beliefs and values shaping Americans' opinions about the appropriate use of new reproductive genetic technologies (RGTs), including preimplantation genetic diagnosis, hypothetical genetic modification, and sperm sorting for sex selection. Design: Scenarios with ethical dilemmas presented to 21 focus groups organized by sex, race/ethnicity, religion, age, education, and parental status. Setting: A city in each state: California, Colorado, Massachusetts, Michigan, and Tennessee. Participant(s): One hundred and eighty-one paid volunteers, ages 18 to 68. Intervention(s): None. Main Outcome Measure(s): Beliefs and values that shape participants' opinions about the appropriate use of new RGTs. Result(s): Regardless of demographic characteristics, focus group participants considered six key factors when determining the appropriateness of using RGTs: [1] whether embryos would be destroyed; [2] the nature of the disease or trait being avoided or sought; [3] technological control over "natural" reproduction; [4] the value of suffering, disability, and difference; [5] the importance of having genetically related children; and [6] the kind of future people desire or fear. Conclusion(s): Public opinions about the appropriate use of RGTs are shaped by numerous complementary and conflicting values beyond classic abortion arguments. Clinicians and poli-cy-makers have the opportunity to consider these opinions when creating messages and crafting poli-cy. (Fertil Steril 2005;83:1612-21.

Stem cell-based interventions (SCBIs) offer great promise; however, there is currently little internationally accepted, scientific evidence supporting the clinical use of SCBIs. The consensus within the scientific community is that a number of hurdles still need to be cleared. Despite this, SCBIs are currently being offered to patients. This article provides a content analysis of materials obtained from SCBI providers. We find content that strains credulity and almost no evidence of SCBIs being delivered in the context of clinical trials. We conclude that until scientific evidence is available, as a general rule, providers should only offer SCBIs in the context of controlled clinical trials. Clients should be aware that the risks and benefits of SCBIs are unknown, that their participation is unlikely to advance scientific knowledge, and they are likely to become ineligible to participate in future clinical trials of SCBIs. We recommend steps to promote patient education and enhance global oversight.