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  1 / 9401 MEDLINE  
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[PMID]:29406037
[Au] Autor:Faith TD; Egede L; Williams EM
[Ad] Endereço:Department of Public Health Sciences, Medical University of South Carolina, Charleston, South Carolina. Electronic address: wiled@musc.edu.
[Ti] Título:Research Ethics in Behavioral Interventions Among Special Populations: Lessons From the Peer Approaches to Lupus Self-Management Study.
[So] Source:Am J Med Sci;355(2):104-112, 2018 02.
[Is] ISSN:1538-2990
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Research involving a homogenous cohort of participants belonging to a special population must make considerations to recruit and protect the subjects. This study analyses the ethical considerations made in the peer approaches to lupus self-management project which pilot tested a peer mentoring intervention for African American women with systemic lupus erythematosus. METHODS: Considerations made at the outset of the project are described and their justifications and reasoning are given. Through analysis of feedback from a postintervention focus group and mentors' logs, implications on program outcomes and participant satisfaction are discussed. RESULTS: Feedback indicated the importance of recruiting and training capable mentors, consistent contact from study staff to avert adverse events and avert fear or mistrust and careful consideration that must go into the pairing of mentors and mentees. Participant feedback also indicated that sensitive topics must be addressed carefully to prevent distress and dissatisfaction. CONCLUSIONS: Applying the lessons learned from this work as well as the considerations that proved successful may improve the contextualization and ethical conduct of behavioral interventions in special populations resulting in improved tailoring and acceptability toward historically underserved individuals.
[Mh] Termos MeSH primário: Afroamericanos
Ética
Lúpus Eritematoso Sistêmico/terapia
Educação de Pacientes como Assunto/ética
Automedicação/ética
[Mh] Termos MeSH secundário: Assistência à Saúde/ética
Feminino
Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE; RESEARCH SUPPORT, N.I.H., EXTRAMURAL
[Em] Mês de entrada:1803
[Cu] Atualização por classe:180301
[Lr] Data última revisão:
180301
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:180207
[St] Status:MEDLINE


  2 / 9401 MEDLINE  
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[PMID]:28854227
[Au] Autor:Klain SC; Olmsted P; Chan KMA; Satterfield T
[Ad] Endereço:College of Earth, Ocean and Atmospheric Science, Oregon State University, Corvallis, Oregon, United States of America.
[Ti] Título:Relational values resonate broadly and differently than intrinsic or instrumental values, or the New Ecological Paradigm.
[So] Source:PLoS One;12(8):e0183962, 2017.
[Is] ISSN:1932-6203
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:Value orientations used to explain or justify conservation have been rooted in arguments about how much and in what context to emphasize the intrinsic versus instrumental value of nature. Equally prominent are characterizations of beliefs known as the New Ecological Paradigm (NEP), often used to help explain pro-environmental behaviour. A recent alternative to these positions has been identified as 'relational value'-broadly, values linking people and ecosystems via tangible and intangible relationships to nature as well as the principles, virtues and notions of a good life that may accompany these. This paper examines whether relational values are distinct from other value orientation and have potential to alleviate the intrinsic-instrumental debate. To test this possibility, we sought to operationalize the construct-relational values-by developing six relational statements. We ask: 1) Do the individual statements used to characterize relational values demonstrate internal coherence as either a single or multi-dimensional construct? 2) Do relational value statements (including those strongly stated) resonate with diverse populations? 3) Do people respond to relational value statements in a consistently different way than NEP scale statements? Data for this work is drawn from an online panel of residents of northeastern US (n = 400), as well as a sample of Costa Rican farmers (n = 253) and tourists in Costa Rica (n = 260). Results indicate relational values are distinct as a construct when compared to the NEP.
[Mh] Termos MeSH primário: Conservação dos Recursos Naturais
[Mh] Termos MeSH secundário: Adulto
Conservação dos Recursos Naturais/métodos
Costa Rica
Ecossistema
Escolaridade
Ética
Fazendeiros
Feminino
Seres Humanos
Renda
Masculino
Meia-Idade
Valores Sociais
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171016
[Lr] Data última revisão:
171016
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170831
[St] Status:MEDLINE
[do] DOI:10.1371/journal.pone.0183962


  3 / 9401 MEDLINE  
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[PMID]:28715476
[Au] Autor:Ostermaier A; Uhl M
[Ad] Endereço:TUM School of Management, Technische Universität München, Munich, Germany.
[Ti] Título:Spot on for liars! How public scrutiny influences ethical behavior.
[So] Source:PLoS One;12(7):e0181682, 2017.
[Is] ISSN:1932-6203
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:We examine whether people are more honest in public than in private. In a laboratory experiment, we have subjects roll dice and report outcomes either in public or in private. Higher reports yield more money and lies cannot be detected. We also elicit subjects' ethical mindsets and their expectations about others' reports. We find that outcome-minded subjects lie less in public to conform with their expectations about others' reports. Ironically, these expectations are false. Rule-minded subjects, in turn, do not respond to public scrutiny. These findings challenge the common faith in public scrutiny to promote ethical behavior. While public scrutiny eventually increases honesty, this effect is contingent on people's mindsets and expectations.
[Mh] Termos MeSH primário: Decepção
Ética
Relações Interpessoais
Comportamento Social
[Mh] Termos MeSH secundário: Análise de Variância
Feminino
Seres Humanos
Masculino
Testes Psicológicos
Pensamento
Adulto Jovem
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171024
[Lr] Data última revisão:
171024
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170718
[St] Status:MEDLINE
[do] DOI:10.1371/journal.pone.0181682


  4 / 9401 MEDLINE  
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[PMID]:28600340
[Au] Autor:Marron JM; Joffe S
[Ad] Endereço:Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA.
[Ti] Título:Ethical considerations in genomic testing for hematologic disorders.
[So] Source:Blood;130(4):460-465, 2017 Jul 27.
[Is] ISSN:1528-0020
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:As our technological capacities improve, genomic testing is increasingly integrating into patient care. The field of clinical hematology is no exception. Genomic testing carries great promise, but several ethical issues must be considered whenever such testing is performed. This review addresses these ethical considerations, including issues surrounding informed consent and the uncertainty of the results of genomic testing; the challenge of incidental findings; and possible inequities in access to and benefit from such testing. Genomic testing is likely to transform the practice of both benign and malignant hematology, but clinicians must carefully consider these core ethical issues in order to make the most of this exciting and evolving technology.
[Mh] Termos MeSH primário: Bioética
Ética
Testes Genéticos/ética
Neoplasias Hematológicas/genética
[Mh] Termos MeSH secundário: Testes Genéticos/métodos
Testes Genéticos/tendências
Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE; REVIEW
[Em] Mês de entrada:1708
[Cu] Atualização por classe:170826
[Lr] Data última revisão:
170826
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170611
[St] Status:MEDLINE
[do] DOI:10.1182/blood-2017-01-734558


  5 / 9401 MEDLINE  
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[PMID]:28399664
[Au] Autor:Johnson LM; Hamilton KV; Valdez JM; Knapp E; Baker JN; Nichols KE
[Ad] Endereço:a Section of Bioethics , St. Jude Children's Research Hospital , Memphis , TN , USA.
[Ti] Título:Ethical considerations surrounding germline next-generation sequencing of children with cancer.
[So] Source:Expert Rev Mol Diagn;17(5):523-534, 2017 May.
[Is] ISSN:1744-8352
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:INTRODUCTION: The advent of next-generation sequencing (NGS) has introduced an exciting new era in biomedical research. NGS forms the foundation of current genetic testing approaches, including targeted gene panel testing, as well as more comprehensive whole-exome and whole-genome sequencing. Together, these approaches promise to provide critical insights into the understanding of health and disease. However, with NGS testing come many ethical questions and concerns, particularly when testing involves children. These concerns are especially relevant for children with cancer, where the testing of tumor and germline tissues is increasingly being incorporated into clinical care. Areas covered: In this manuscript, we explore the key ethical considerations related to conducting germline NGS testing in pediatric oncology, focusing on the four main principles of beneficence, non-maleficence, autonomy and justice. Expert commentary: The ethical issues surrounding germline NGS testing are complex and result in part from our limited understanding of the medical relevance of many of the results obtained and poor knowledge of the impacts of testing, both beneficial and detrimental, on patients and their families. In this article we discuss the risks and benefits of germline NGS testing and the arguments for and against such testing in children with cancer.
[Mh] Termos MeSH primário: Ética
Mutação em Linhagem Germinativa
Sequenciamento de Nucleotídeos em Larga Escala/ética
Sequenciamento de Nucleotídeos em Larga Escala/métodos
Neoplasias/genética
[Mh] Termos MeSH secundário: Adolescente
Criança
Pré-Escolar
Feminino
Seres Humanos
Lactente
Masculino
[Pt] Tipo de publicação:JOURNAL ARTICLE; REVIEW
[Em] Mês de entrada:1705
[Cu] Atualização por classe:170522
[Lr] Data última revisão:
170522
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170413
[St] Status:MEDLINE
[do] DOI:10.1080/14737159.2017.1316665


  6 / 9401 MEDLINE  
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[PMID]:28397033
[Au] Autor:Post SG; Pomeroy J; Keirns C; Cover VI; Dorn ML
[Ad] Endereço:Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA. Stephen.Post@StonyBrookMedicine.edu.
[Ti] Título:A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines.
[So] Source:HEC Forum;29(2):93-126, 2017 Jun.
[Is] ISSN:1572-8498
[Cp] País de publicação:Netherlands
[La] Idioma:eng
[Ab] Resumo:The increased recognition and reported prevalence of autism spectrum disorders (ASD) combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue (2010-2011) with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on "top-down" imposition of professional expertise, but rather on a "bottom-up" grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are meaningful for the wider social conversation emerging over the treatment of individuals with ASD.
[Mh] Termos MeSH primário: Transtorno Autístico
Serviços de Saúde Mental/ética
Guias de Prática Clínica como Assunto
Comportamento Social
[Mh] Termos MeSH secundário: Transtorno Autístico/psicologia
Transtorno Autístico/reabilitação
Transtorno Autístico/terapia
Comunicação
Ética
Seres Humanos
Serviços de Saúde Mental/normas
Pais
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1711
[Cu] Atualização por classe:171107
[Lr] Data última revisão:
171107
[Sb] Subgrupo de revista:H
[Da] Data de entrada para processamento:170412
[St] Status:MEDLINE
[do] DOI:10.1007/s10730-017-9320-9


  7 / 9401 MEDLINE  
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[PMID]:28323603
[Au] Autor:Kuczewski MG
[Ad] Endereço:Fr. Michael I. English, SJ, Professor of Medical Ethics at Loyola University Chicago Stritch School of Medicine in Maywood, Illinois, and the director of the Neiswanger Institute for Bioethics and Health Policy and the chair of the Department of Medical Education.
[Ti] Título:How Medicine May Save the Life of US Immigration Policy: From Clinical and Educational Encounters to Ethical Public Policy.
[So] Source:AMA J Ethics;19(3):221-233, 2017 Mar 01.
[Is] ISSN:2376-6980
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:Medicine has a conceptual contribution to make to the immigration debate. Our nation has been unable to move forward with meaningful immigration reform because many citizens seem to assume that immigrants are in the United States to access benefits to which they are not entitled. In contrast, when medicine encounters undocumented immigrants in the health care or medical education setting, it is obvious that their contributions to our health care system are denied by exclusionary laws. When the system is amended to be inclusive, immigrants become contributors to the systems that they access. I illustrate this thesis concerning the benefits of inclusion through an examination of the issues of forced medical repatriation, access to health insurance, and the access of undocumented students to medical education.
[Mh] Termos MeSH primário: Educação Médica
Emigrantes e Imigrantes
Emigração e Imigração
Ética
Política Pública
[Mh] Termos MeSH secundário: Acesso aos Serviços de Saúde
Seres Humanos
Estados Unidos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170901
[Lr] Data última revisão:
170901
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170322
[St] Status:MEDLINE


  8 / 9401 MEDLINE  
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[PMID]:28253515
[Au] Autor:Allen DB
[Ti] Título:Growth Promotion Ethics and the Challenge to Resist Cosmetic Endocrinology
.
[So] Source:Horm Res Paediatr;87(3):145-152, 2017.
[Is] ISSN:1663-2826
[Cp] País de publicação:Switzerland
[La] Idioma:eng
[Ab] Resumo:The advancement of "human growth hormone (hGH)-for-height" - increasing height attainment in children short for reasons other than GH deficiency - arose from intuitive, deep-seated assumptions about the disability of short stature, its improvement with hGH-mediated height gain, and the safety of escalating dosages of hGH in healthy children. Evidence challenging these assumptions now strengthens criticism of hGH-for-height as cosmetic endocrinology. To counter this characterization, collective acceptance of guidelines is needed that advise nontreatment of the vast majority of short children, support strategies that minimize treatment duration and dosage, and restrain enhancement of normal adult stature. Through a clinical case analysis, ethical issues underlying these recommendations are explored. These include duties to provide informed assent and re-assent, protect children from unnecessary treatment, consider fairness to nontreated children, and allocate healthcare resources responsibly. Informed assent for hGH-for-height should ensure awareness of modest, variable height gain expectations, limited evidence for psychosocial benefit, ongoing studies for potential posttreatment adverse effects, and options for less expensive/invasive approaches, including nontreatment and counseling. Approaching growth pro-motion in this way fosters therapeutic restraint, resists the al lure of enhancement therapy, and minimizes contributions to society's perception that to be taller is to be better.
.
[Mh] Termos MeSH primário: Estatura/efeitos dos fármacos
Ética
Hormônio do Crescimento Humano/uso terapêutico
[Mh] Termos MeSH secundário: Adulto
Feminino
Seres Humanos
Masculino
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Nm] Nome de substância:
12629-01-5 (Human Growth Hormone)
[Em] Mês de entrada:1705
[Cu] Atualização por classe:170522
[Lr] Data última revisão:
170522
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170303
[St] Status:MEDLINE
[do] DOI:10.1159/000458526


  9 / 9401 MEDLINE  
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[PMID]:28236152
[Au] Autor:Ashby M
[Ad] Endereço:Palliative Care Service, Royal Hobart Hospital, Tasmanian Health Service, and School of Medicine, Faculty of Health Sciences, University of Tasmania, 1st Floor, Peacock Building, Repatriation Centre, 90 Davey Street, Hobart, TAS, 7000, Australia. michael.ashby@ths.tas.gov.au.
[Ti] Título:The Ninth Circle: Who and What Do We Trust In Today's World?
[So] Source:J Bioeth Inq;14(1):7-12, 2017 03.
[Is] ISSN:1176-7529
[Cp] País de publicação:Netherlands
[La] Idioma:eng
[Mh] Termos MeSH primário: Bioética
Confiança
[Mh] Termos MeSH secundário: Ética
Seres Humanos
Filosofia
[Pt] Tipo de publicação:EDITORIAL; COMMENT
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171105
[Lr] Data última revisão:
171105
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170226
[St] Status:MEDLINE
[do] DOI:10.1007/s11673-017-9777-x


  10 / 9401 MEDLINE  
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[PMID]:28118107
[Au] Autor:Jones RD; Sabolch AN; Aakhus E; Spence RA; Bradbury AR; Jagsi R
[Ad] Endereço:University of Michigan, Ann Arbor, MI; American Society of Clinical Oncology, Alexandria, VA; and University of Pennsylvania, Philadelphia, PA.
[Ti] Título:Patient Perspectives on the Ethical Implementation of a Rapid Learning System for Oncology Care.
[So] Source:J Oncol Pract;13(3):e163-e175, 2017 Mar.
[Is] ISSN:1935-469X
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:INTRODUCTION: A rapid learning system (RLS) of health care harnesses data generated from routine patient care to create a virtuous cycle of data collection and analysis for quality improvement and research. The success of such systems depends on understanding patient perspectives regarding the ethical issues that arise from the ongoing implementation of this transformative concept. METHODS: An interview guide was designed to evaluate patient perspectives to inform the ethical implementation of an oncology RLS. A purposively selected, diverse sample of 32 patients with cancer was recruited from two institutions to participate in semistructured, in-depth interviews for formal qualitative analysis. RESULTS: The extent to which respondents expressed discomfort with more permissive system features (less formal notification/consent, broader uses/users, inclusion of sensitive data) reflected their trust, which in turn seemed to vary by sociodemographic features. It was also influenced by their familiarity with technology and their attitudes and beliefs regarding privacy and the use of electronic medical records more generally. Distrust of insurers and the pharmaceutical industry led subjects to desire greater oversight and restriction of these potential users of the system. Subjects were most comfortable when doctors were the primary users, engaged patients directly in the notification and consent discussion, and oversaw the system. CONCLUSION: Those actively developing RLSs should recognize the critical importance of trust and the key role that doctors will need to play in order for such systems to be successful and to ensure that their implementation is ethically palatable to the patients whose data are being included.
[Mh] Termos MeSH primário: Oncologia/educação
Participação do Paciente/métodos
[Mh] Termos MeSH secundário: Ética
Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171025
[Lr] Data última revisão:
171025
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170125
[St] Status:MEDLINE
[do] DOI:10.1200/JOP.2016.016782



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