In 2011, the Department of Health and Human Services proposed changes to the regulations that govern human subjects protection in federally funded research. The proposed changes involve modifying inclusion standards for minimal-risk research and removing the necessity of review from certain categories of noninvasive research. All studies would instead be required to comply with privacy protections as initiated by the Health Information Portability and Accountability Act . We argue that relying on HIPAA to protect participants from participation-related risks in noninvasive (...) research is insufficient to protect the autonomy and psychological health of potential research participants. Instead, we suggest a streamlined review format for these categories of research. (shrink)

Objectives: To investigate life scientists’ views of accountability and the ethical and societal implications of research. Design: Qualitative focus group and one-on-one interviews. Participants: 45 Stanford University life scientists, including graduate students, postdoctoral fellows and faculty. Results: Two main themes were identified in participants’ discussions of accountability: the “how” of science and the “why” of science. The “how” encompassed the internal conduct of research including attributes such as honesty and independence. The “why,” or the motivation for conducting research, was two-tiered: (...) first was the desire to positively impact the research community and science itself, and second was an interest in positively impacting the external community, broadly referred to as society. Participants noted that these motivations were influenced by the current systems of publications, grants and funding, thereby supporting a complex notion of boundary-setting between science and non-science. In addition, while all participants recognised the “how” of science and the two tiers of “why,” scientists expressed the need to prioritise these domains of accountability. This prioritisation was related to a researcher’s position in the academic career trajectory and to the researcher’s subsequent “perceived proximity” to scientific or societal concerns. Our findings therefore suggest the need for institutional change to inculcate early-stage researchers with a broader awareness of the implications of their research. The peer review processes for funding and publication could be effective avenues for encouraging scientists to broaden their views of accountability to society. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to (...) highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research. (shrink)

The US National Institute of Health’s Human Microbiome Project aims to use genomic techniques to understand the microbial communities that live on the human body. The emergent field of microbiome science brought together diverse disciplinary perspectives and technologies, thus facilitating the negotiation of differing values. Here, we describe how values are conceptualized and negotiated within microbiome research. Analyzing discussions from a series of interdisciplinary workshops conducted with microbiome researchers, we argue that negotiations of epistemic, social, and institutional values were inextricable (...) from the reflective and strategic category work that defined and organized the microbiome as an object of study and a potential future site of biomedical intervention. Negotiating the divergence or tension between emerging scientific and regulatory classifications also activated “values levers” and opened up reflective discussions of how classifications embody values and how these values might differ across domains. These data suggest that scholars at the intersections of science and technology studies, ethics, and policy could leverage such openings to identify and intervene in the ways that ethical/regulatory and scientific/technical practices are coproduced within unfolding research. (shrink)

From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M...

This paper investigates potential motivations for late adopting U.S. companies to begin disclosing environmental liability amounts in their financial statements. Based on a review of 10-K reports filed from 1998 through 2012, inclusive, we identified 55 firms initiating environmental liability disclosure over the period, with all but three doing so by 2006. Focusing on the disclosers up through 2006, we argue that the companies may have used the disclosure as a tool of impression management to avoid potential stakeholder mis-estimation of (...) previously undisclosed liability exposures. We first compute tests to identify firms that may have begun the disclosure due to (1) materiality and (2) concerns of having proprietary costs imposed upon them due to changes in their environmental media coverage and environmental performance, and we find very few cases where these explanations might hold. For the remaining companies, we compared their newly disclosed liability amount, on average, with the mean level of environmental liability being disclosed by other firms in the year prior to the sample companies’ initiation, and find that it is significantly smaller, thus supporting our impression management argument. Finally, we find that overall level of environmental liability amounts was consistently decreasing over the time frame examined, suggesting that earlier adoption would have made more sense. However, it may also explain why almost no new firms began disclosing after the mid-2000s. (shrink)

1. Pŏmbu ŭi p'ungnyu chŏngsin ch'ŏnmyŏng kwa "Hwarang oesa" kusang : kungmin todŏk seugi wa kwallyŏn hayŏ -- 2. Nae ka ponŭn Pŏmbu wa Pak Chŏng-hŭi ŭi sasŭng kwan'gye : Pak Chŏng-hŭi chipkwŏn ch'ogi ŭi chŏngch'i kihoek kwa kwallyŏn hayŏ -- 3. Han t'ojong sasangga ŭi sam kwa saenggak : iyagi ka innŭn Pŏmbu kim chŏngsŏl yŏnbo -- 4. Samin chŏngdam : chŏngch'i, kyŏngje, munhwa e kŏlch'yŏ -- 5. Yŏhaenggi : kurŭm ttara mul ttara ch'ŏlli rŭl kada.

Cho and Martinez-Martin provide a wide-ranging analysis of what they label “digital simulacra”—which are in essence data-driven AI-based simulation models such as digital twins or models used for i...

덜그럭 덜그럭 소란한 우리네 마음 살림살이를 깨끗하게 청소해주는 산중 큰스님을 만나다 “쩔쩔 맬 것 없이, 집착할 것도 없이, 한세상 훨훨 살아라!” ‘집안 살림’이 아무리 풍족해도 ‘마음 살림’ 부족하면 다 헛인생이다. 진짜 잘사는 사람은 쩔쩔 맬 일도 없이, 집착할 것도 없이 트인 마음으로 훨훨 살아가는 사람이 아닐까? 그런 길로 안내하는 스물일곱 산중 선승들을 만났다.“우리는 누구인가”, “어떻게 살아야 하는가”, “마음과 몸이 힘들고 어려울 때는 어떻게 해야 할까”. 저자는 오래전부터 팍팍한 세상에 필요한 ‘마음 살림살이’를 탁발하러 선승들을 찾아다녔다. 때로는 시대와 역사와 사회에 대한 촌철의 (...) 말씀을 청했고, 때로는 노스님의 살아온 이야기를 듣고 일상을 엿보기도 했다. 모든 스님들이 무더운 여름날 한줄기 시원한 소나기였다. 이 책에는 ‘염화실의 향기’라는 이름으로 경향신문에 연재한 글을 보완해 다시 쓴 것과 이후 만난 큰스님까지 모두 스물일곱 분의 이야기를 담았다. 그사이 이 세상을 떠나가신 큰스님들은 2부에 따로 모셨다. 스님들 몸은 산중에 있어서도 그 말씀은 속세를 떠나지 않았다. 어지럽고 어려운 이 세상을 향한 한 말씀 한 말씀은 송곳처럼 정곡을 찌르며 우리네 눈과 귀, 마음을 환하게 밝혀준다. 깨끗하게 비질 된 큰스님들의 ‘마음 마당’을 거닐다보면, 누구나 잃었던 마음의 본래 밝음을 되찾고, 저마다 ‘마음을 살리는 화두’ 하나씩 가슴에 품게 된다. (shrink)

1. An Tŏng-mun ŭi hangmun chŏngsin kwa ch'ŏse pangsik -- 2. An Tŏng-mun ŭi Samsan Sŏwŏn wisang chŏngnip kwa kŭ ŭimi -- 3. Ha Ik-pŏm ŭi sam kwa munhak -- 4. Pak Ch'i-bok ŭi Nammyŏnghak kyesŭng yangsang -- 5. Kang Pyŏng-ju ŭi hangmun kwa munhak -- 6. Chŏng Chae-gyu ŭi hangmun chŏngsin kwa 'Taehak' haesŏk -- 7. Kim Chin-ho ŭi haksŏl e taehayŏ -- 8. Kwak Chong-sŏk ŭi Myŏngdŏksŏl nonjaeng -- 9. Kim Hwang ŭi Kyŏnghak Sipto e taehayŏ.

1. Chosŏn sidae Kyŏnghak ŭi kwanchŏm kwa yŏnbyŏn -- 2. Han'guk Kyŏnghak yŏn'gu ŭi hoego wa chŏnmang -- 3. Han'guk Kyŏnghak ŭi chŏn'gae wa t'ŭkching -- 4. "Taehak" haesŏk ŭi yŏn'gu hyŏnhwang kwa hyangbang -- 5. Chosŏn sidae "Chungyong" haesŏk ŭi yangsang kwa t'ŭching : Tosŏl ŭl chungsim ŭro -- 6. Chosŏn chŏn'gi kyŏngsŏ haesŏk kwa Yi Hwang, Cho Sik ŭi Kyŏnghak -- 7. Chosŏn hugi Yŏngnam ŭi Kyŏnghak yŏn'gu wa sot'ong ŭi mosaek -- 8. Paekho Yun Hyu ŭi kyŏnghakkwan (...) -- 9. 18-segi ŭi haksul tonghyang kwa Yi Ik ŭi Kyŏnghak -- 10. Sŏngho Yi Ik "Taehak", "Chungyong" haesŏk. (shrink)

Background One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods A qualitative study using in-depth (...) face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future. (shrink)

Non-fiction graphic novels about illness and death created by patients and their loved ones have much to teach all readers. However, the bond of empathy made possible in the comic form may have special lessons for healthcare providers who read these texts and are open to the insights they provide.

1. Yugyo chŏnt'ong kwa taedong inyŏm -- 2. Yugyo chŏnt'ong, Han'guk minjujuŭi, taedong minjujuŭi -- 3. Taedong minjujuŭi wa pip'an iron ŭi pangbŏp -- 4. Munmyŏng chŏnhwan ŭi sidae wa saengt'ae, taedong minjujuŭi ŭi kanŭngsŏng.

There is no doubt that custard apple diseases are among the important reasons that destroy the Custard Apple plant and its agricultural crops. This leads to obvious damage to these plants and they become inedible. Discovering these diseases is a good step to provide the appropriate and correct treatment. Determining the treatment with high accuracy depends on the method used to correctly diagnose the disease, expert systems can greatly help in avoiding damage to these plants. The expert system correctly diagnoses (...) Custard Apple disease to make it easier for farmers to find the right treatment based on the appropriate diagnosis. Objectives: A specialized syllable language system was established for the diagnosis of Custard Apple plant disease. (shrink)

The notion of a Sasaki projectionon an orthomodular lattice is generalized to a mapping Φ: E × E → E, where E is an effect algebra. If E is lattice ordered and Φ is symmetric, then E is called a Φ-symmetric effect algebra.This paper launches a study of such effect algebras. In particular, it is shown that every interval effect algebra with a lattice-ordered ambient group is Φ-symmetric, and its group is the one constructed by Ravindran in his proof that (...) every effect algebra that has the Riesz decomposition property is an interval algebra. It is shown that the doubling construction introduced in the paper is connected to the conditional event algebrasof Goodman, Nguyen, and Walker. (shrink)

Background: Hospital nurses are frequently the first care givers to receive a patient’s request for euthanasia or physician-assisted suicide (PAS). In France, there is no consensus over which medical practices should be considered euthanasia, and this lack of consensus blurred the debate about euthanasia and PAS legalisation. This study aimed to investigate French hospital nurses’ opinions towards both legalisations, including personal conceptions of euthanasia and working conditions and organisation. Methods: A phone survey conducted among a random national sample of 1502 (...) French hospital nurses. We studied factors associated with opinions towards euthanasia and PAS, including contextual factors related to hospital units with random-effects logistic models. Results: Overall, 48% of nurses supported legalisation of euthanasia and 29%, of PAS. Religiosity, training in pallative care/pain management and feeling competent in end-of-life care were negatively correlated with support for legalisation of both euthanasia and PAS, while nurses working at night were more prone to support legalisation of both. The support for legalisation of euthanasia and PAS was also weaker in pain treatment/palliative care and intensive care units, and it was stronger in units not benefiting from interventions of charity/religious workers and in units with more nurses. Conclusions: Many French hospital nurses uphold the legalisation of euthanasia and PAS, but these nurses may be the least likely to perform what proponents of legalisation call “good” euthanasia. Improving professional knowledge of palliative care could improve the management of end-of-life situations and help to clarify the debate over euthanasia. (shrink)