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Pesquisa : I01.880.604.473.352.500.320 [Categoria DeCS]
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[PMID]:29210258
[Au] Autor:de Paor A
[Ti] Título:Genetic Discrimination: A Case for a European Legislative Response?
[So] Source:Eur J Health Law;24(2):135-59, 2017 Apr.
[Is] ISSN:0929-0273
[Cp] País de publicação:Netherlands
[La] Idioma:eng
[Ab] Resumo:With rapid scientific and technological advances, a new genetic era is emerging. However, these advances raise ethical and legal issues, particularly genetic discrimination, that may threaten advancing science in the absence of appropriate regulation. There is currently no concrete legislative position in this area at EU level, but rather a patchwork of diverging legislative approaches amongst Member States. Genetic discrimination has been singled out as an area of reform in Europe as evidenced, for example in EU Charter of Fundamental Rights, Article 21.1 prohibiting discrimination based on 'genetic features.' The United Nations Convention on the Rights of Persons with Disabilities also informs this debate and may spur legislative action. From a transatlantic perspective, the United States' federal legislation (Genetic Information Non Discrimination Act) is noteworthy. Considering scientific and technological developments, the rights at stake and the various regulatory benchmarks, this paper explores the regulation of genetic information in the EU.
[Mh] Termos MeSH primário: Privacidade Genética/legislação & jurisprudência
Preconceito/legislação & jurisprudência
[Mh] Termos MeSH secundário: Europa (Continente)
Testes Genéticos/legislação & jurisprudência
Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1712
[Cu] Atualização por classe:171228
[Lr] Data última revisão:
171228
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:171207
[St] Status:MEDLINE


  2 / 1725 MEDLINE  
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[PMID]:28691916
[Au] Autor:Williams R; Wienroth M
[Ad] Endereço:Faculty of Health and Life Sciences, Northumbria University, Ellison Place, Newcastle upon Tyne, Tyne and Wear, England, United Kingdom.
[Ti] Título:Social and ethical aspects of forensic genetics: A critical review.
[So] Source:Forensic Sci Rev;29(2):145-169, 2017 Jul.
[Is] ISSN:1042-7201
[Cp] País de publicação:China (Republic : 1949- )
[La] Idioma:eng
[Ab] Resumo:This review describes the social and ethical responses to the history of innovations in forensic genetics and their application to criminal investigations. Following an outline of the three recurrent social perspectives that have informed these responses (crime management, due process, and genetic surveillance), it goes on to introduce the repertoire of ethical considerations by describing a series of key reports that have shaped subsequent commentaries on forensic DNA profiling and databasing. Four major ethical concerns form the focus of the remainder of the paper (dignity, privacy, justice, and social solidarity), and key features of forensic genetic practice are examined in the light of these concerns. The paper concludes with a discussion of the concept of "proportionality" as a resource for balancing the social and ethical risks and benefits of the use of forensic genetics in support of criminal justice.
[Mh] Termos MeSH primário: Genética Forense/ética
Genética Forense/legislação & jurisprudência
[Mh] Termos MeSH secundário: Impressões Digitais de DNA/ética
Impressões Digitais de DNA/legislação & jurisprudência
Bases de Dados de Ácidos Nucleicos/ética
Bases de Dados de Ácidos Nucleicos/legislação & jurisprudência
Privacidade Genética/ética
Sequenciamento de Nucleotídeos em Larga Escala/ética
Direitos Humanos/legislação & jurisprudência
Seres Humanos
Autonomia Pessoal
[Pt] Tipo de publicação:JOURNAL ARTICLE; REVIEW
[Em] Mês de entrada:1708
[Cu] Atualização por classe:170829
[Lr] Data última revisão:
170829
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170711
[St] Status:MEDLINE


  3 / 1725 MEDLINE  
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[PMID]:28537794
[Au] Autor:Hudson KL; Pollitz K
[Ad] Endereço:From Hudson Works LLC (K.L.H.), and the Kaiser Family Foundation (K.P.) - both in Washington, DC.
[Ti] Título:Undermining Genetic Privacy? Employee Wellness Programs and the Law.
[So] Source:N Engl J Med;377(1):1-3, 2017 Jul 06.
[Is] ISSN:1533-4406
[Cp] País de publicação:United States
[La] Idioma:eng
[Mh] Termos MeSH primário: Planos para Motivação de Pessoal/legislação & jurisprudência
Privacidade Genética/legislação & jurisprudência
Promoção da Saúde/legislação & jurisprudência
[Mh] Termos MeSH secundário: Coerção
Pessoas com Deficiência/legislação & jurisprudência
Regulamentação Governamental
Planos de Assistência de Saúde para Empregados/legislação & jurisprudência
Health Insurance Portability and Accountability Act
Promoção da Saúde/normas
Seres Humanos
Patient Protection and Affordable Care Act
Estados Unidos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1707
[Cu] Atualização por classe:170719
[Lr] Data última revisão:
170719
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170525
[St] Status:MEDLINE
[do] DOI:10.1056/NEJMp1705283


  4 / 1725 MEDLINE  
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[PMID]:28501562
[Au] Autor:Dheensa S; Carrieri D; Kelly S; Clarke A; Doheny S; Turnpenny P; Lucassen A
[Ad] Endereço:Clinical Ethics and Law, Faculty of Medicine, University of Southampton, UK; ELSI Group, Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands. Electronic address: s.dheensa@soton.ac.uk.
[Ti] Título:A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation.
[So] Source:Eur J Med Genet;60(7):403-409, 2017 Jul.
[Is] ISSN:1878-0849
[Cp] País de publicação:Netherlands
[La] Idioma:eng
[Ab] Resumo:Advances in genomics often lead healthcare professionals (HCPs) to learn new information, e.g., about reinterpreted variants that could have clinical significance for patients seen previously. A question arises of whether HCPs should recontact these former patients. We present some findings interrogating the views of patients (or parents of patients) with a rare or undiagnosed condition about how such recontacting might be organised ethically and practically. Forty-one interviews were analysed thematically. Participants suggested a 'joint venture' model in which efforts to recontact are shared with HCPs. Some proposed an ICT-approach involving an electronic health record that automatically alerts them to potentially relevant updates. The need for rigorous privacy controls and transparency about who could access their data was emphasised. Importantly, these findings highlight that the lack of clarity about recontacting is a symptom of a wider problem: the lack of necessary infrastructure to pool genomic data responsibly, to aggregate it with other health data, and to enable patients/parents to receive updates. We hope that our findings will instigate a debate about the way responsibilities for recontacting under any joint venture model could be allocated, as well as the limitations and normative implications of using ICT as a solution to this intractable problem. As a first step to delineating responsibilities in the clinical setting, we suggest HCPs should routinely discuss recontacting with patients/parents, including the new information that should trigger a HCP to initiate recontact, as part of the consent process for genetic testing.
[Mh] Termos MeSH primário: Dever de Recontatar
Privacidade Genética/ética
Serviços em Genética/ética
Genômica/ética
[Mh] Termos MeSH secundário: Privacidade Genética/normas
Serviços em Genética/normas
Genômica/normas
Pessoal de Saúde/ética
Pessoal de Saúde/normas
Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170928
[Lr] Data última revisão:
170928
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170515
[St] Status:MEDLINE


  5 / 1725 MEDLINE  
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[PMID]:28423787
[Au] Autor:Lindoerfer D; Mansmann U
[Ad] Endereço:Institute for Medical Information Processing, Biometry and Epidemiology (IBE), Ludwig-Maximilians-Universität München, Munich, Germany.
[Ti] Título:IT Infrastructure of an Oncological Trial Where Xenografts Inform Individual Second Line Treatment Decision.
[So] Source:Stud Health Technol Inform;235:226-230, 2017.
[Is] ISSN:0926-9630
[Cp] País de publicação:Netherlands
[La] Idioma:eng
[Ab] Resumo:Translational clinical research is often characterized by a unidirectional information flow from clinical to molecular data by using phenotypes to elucidate molecular disease processes. Here we present the RESIST study which uses xenograft information for individual treatment decisions after resistance to a specific anticancer treatment establishing a bidirectional information flow between patient and molecular biology. The paper discusses the specific challenges related to the IT infrastructure for such bidirectional translational projects and proposes solutions. A specific focus is the safeguarding genomic privacy.
[Mh] Termos MeSH primário: Anonimização de Dados
Privacidade Genética
Xenoenxertos
Informática Médica/métodos
[Mh] Termos MeSH secundário: Ensaios Clínicos como Assunto/normas
Neoplasias Colorretais/tratamento farmacológico
Neoplasias Colorretais/genética
Neoplasias Colorretais/cirurgia
Seres Humanos
Pesquisa Médica Translacional/métodos
Pesquisa Médica Translacional/organização & administração
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171020
[Lr] Data última revisão:
171020
[Sb] Subgrupo de revista:T
[Da] Data de entrada para processamento:170421
[St] Status:MEDLINE


  6 / 1725 MEDLINE  
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[PMID]:28306396
[Au] Autor:Holm IA; Yu TW; Joffe S
[Ad] Endereço:1 Division of Genetics and Genomics, The Manton Center for Orphan Diseases Research , Boston Children's Hospital, Boston, Massachusetts.
[Ti] Título:From Sequence Data to Returnable Results: Ethical Issues in Variant Calling and Interpretation.
[So] Source:Genet Test Mol Biomarkers;21(3):178-183, 2017 Mar.
[Is] ISSN:1945-0257
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:A discussion of return of genetic research results requires a common understanding of how final results are generated and what the scope of potential results may be. To this end, we provide a brief overview of the steps by which human genomic data, whether in the clinical or research setting, are generated and interpreted. We cover (1) DNA targeting methods, (2) sequencing, (3) mapping, (4) variant calling, (5) annotation, and (6) interpretation. As powerful as this technology is, we point out technical, scientific, and clinical limitations that inject uncertainty into interpretations based on genotypic data alone. Given these considerations, we then discuss ethical issues that arise as decisions are made regarding how human genomic data are generated and interpreted in the research setting, and we propose an ethical framework by which researchers can assert policies at the points of control that maximize rewards, while minimizing risks.
[Mh] Termos MeSH primário: Temas Bioéticos
Bases de Dados Genéticas/ética
Privacidade Genética/ética
Testes Genéticos/ética
[Mh] Termos MeSH secundário: Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1703
[Cu] Atualização por classe:170513
[Lr] Data última revisão:
170513
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170318
[St] Status:MEDLINE
[do] DOI:10.1089/gtmb.2016.0413


  7 / 1725 MEDLINE  
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[PMID]:28272533
[Au] Autor:Moray N; Pink KE; Borry P; Larmuseau MH
[Ad] Endereço:Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium.
[Ti] Título:Paternity testing under the cloak of recreational genetics.
[So] Source:Eur J Hum Genet;25(6):768-770, 2017 Jun.
[Is] ISSN:1476-5438
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:Direct-to-consumer (DTC) internet companies are selling widely advertised and highly popular genetic ancestry tests to the broad public. These tests are often classified as falling within the scope of so-called 'recreational genetics', but little is known about the impact of using these services. In this study, a particular focus is whether minors (and under what conditions) should be able to participate in the use of these DTC tests. Current ancestry tests are easily able to reveal whether participants are related and can, therefore, also reveal misattributed paternity, with implications for the minors and adults involved in the testing. We analysed the publicly available privacy policies and terms of services of 43 DTC genetic ancestry companies to assess whether minors are able to participate in testing DTC genetic ancestry, and also whether and how companies ethically account for the potential of paternity inference. Our results indicated that the majority of DTC genetic ancestry testing companies do not specifically address whether minors are able to participate in testing. Furthermore, the majority of the policies and terms of services fail to mention the vulnerability of minors and family members in receiving unexpected information, in particular, in relation to (misattributed) paternity. Therefore, recreational genetics carries both the risk of unintentionally revealing misidentified paternity, and also the risk that fathers will deliberately use these services to test their children's paternity without revealing their intentions to the mother or any other third party.
[Mh] Termos MeSH primário: Triagem e Testes Direto ao Consumidor/ética
Privacidade Genética/ética
Testes Genéticos/ética
Paternidade
[Mh] Termos MeSH secundário: Adolescente
Criança
Defesa da Criança e do Adolescente
Triagem e Testes Direto ao Consumidor/legislação & jurisprudência
Triagem e Testes Direto ao Consumidor/psicologia
Família
Privacidade Genética/legislação & jurisprudência
Privacidade Genética/psicologia
Testes Genéticos/legislação & jurisprudência
Seres Humanos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170912
[Lr] Data última revisão:
170912
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170309
[St] Status:MEDLINE
[do] DOI:10.1038/ejhg.2017.31


  8 / 1725 MEDLINE  
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[PMID]:28207325
[Au] Autor:Lambertson KF; Terry SF
[Ad] Endereço:Genetic Alliance , Washington, District of Columbia.
[Ti] Título:Data Sharing as the New Norm: What About the People Part?
[So] Source:Genet Test Mol Biomarkers;21(2):63-65, 2017 Feb.
[Is] ISSN:1945-0257
[Cp] País de publicação:United States
[La] Idioma:eng
[Mh] Termos MeSH primário: Privacidade Genética/ética
Disseminação de Informação/ética
[Mh] Termos MeSH secundário: Bases de Dados de Ácidos Nucleicos
Privacidade Genética/organização & administração
Testes Genéticos/ética
Testes Genéticos/métodos
Seres Humanos
Disseminação de Informação/métodos
[Pt] Tipo de publicação:EDITORIAL
[Em] Mês de entrada:1704
[Cu] Atualização por classe:170411
[Lr] Data última revisão:
170411
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170217
[St] Status:MEDLINE
[do] DOI:10.1089/gtmb.2017.29026.sjt


  9 / 1725 MEDLINE  
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[PMID]:28171783
[Au] Autor:Teodorovic S; Mijovic D; Radovanovic Nenadic U; Savic M
[Ad] Endereço:Forensics Department, Academy of Criminalistic and Police Studies, Cara Dusana 196, 11080 Belgrade, Serbia. Electronic address: smilja.teodorovic@kpa.edu.rs.
[Ti] Título:Attitudes regarding the national forensic DNA database: Survey data from the general public, prison inmates and prosecutors' offices in the Republic of Serbia.
[So] Source:Forensic Sci Int Genet;28:44-51, 2017 May.
[Is] ISSN:1878-0326
[Cp] País de publicação:Netherlands
[La] Idioma:eng
[Ab] Resumo:Worldwide, the establishment of national forensic DNA databases has transformed personal identification in the criminal justice system over the past two decades. It has also stimulated much debate centering on ethical issues, human rights, individual privacy, lack of safeguards and other standards. Therefore, a balance between effectiveness and intrusiveness of a national DNA repository is an imperative and needs to be achieved through a suitable legal framework. On its path to the European Union (EU), the Republic of Serbia is required to harmonize its national policies and legislation with the EU. Specifically, Chapter 24 of the EU acquis communautaire (Justice, Freedom and Security) stipulates the compulsory creation of a forensic DNA registry and adoption of corresponding legislation. This process is expected to occur in 2016. Thus, in light of launching the national DNA database, the goal of this work is to instigate a consultation with the Serbian public regarding their views on various aspects of the forensic DNA databank. Importantly, this study specifically assessed the opinions of distinct categories of citizens, including the general public, the prosecutors' offices staff, prisoners, prison guards, and students majoring in criminalistics. Our findings set a baseline for Serbian attitudes towards DNA databank custody, DNA sample and profile inclusion and retention criteria, ethical issues and concerns. Furthermore, results clearly demonstrate a permissive outlook of the respondents who are professional "beneficiaries" of genetic profiling and a restrictive position taken by the respondents whose genetic material has been acquired by the government. We believe that this opinion poll will be essential in discussions regarding a national DNA database, as well as in motivating further research on the reasons behind the observed views and subsequent development of educational strategies. All of these are, in turn, expected to aid the creation of suitable legislation and to increase societal confidence that the repository will be used in the legal system without interference with individual rights and freedoms.
[Mh] Termos MeSH primário: Bases de Dados de Ácidos Nucleicos
Opinião Pública
[Mh] Termos MeSH secundário: Adulto
Fatores Etários
Idoso
Atitude
Escolaridade
Feminino
Privacidade Genética
Seres Humanos
Masculino
Meia-Idade
Prisioneiros
Sistema de Registros
Sérvia
Adulto Jovem
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1707
[Cu] Atualização por classe:170707
[Lr] Data última revisão:
170707
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170208
[St] Status:MEDLINE


  10 / 1725 MEDLINE  
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[PMID]:28166481
[Au] Autor:Trachtenbarg DE; Asche C; Ramsahai S; Duling J; Ren J
[Ad] Endereço:a The University of Illinois College of Medicine Peoria , IL , USA.
[Ti] Título:The benefits, risks and costs of privacy: patient preferences and willingness to pay.
[So] Source:Curr Med Res Opin;33(5):845-851, 2017 May.
[Is] ISSN:1473-4877
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:OBJECTIVE: Multiple surveys show that patients want medical privacy; however, there are costs to maintaining privacy. There are also risks if information is not shared. A review of previous surveys found that most surveys asked questions about patient's privacy concerns and willingness to share their medical information. We found only one study that asked about sharing medical information for better care and no survey that asked patients about the risk, cost or comparison between medical privacy and privacy in other areas. To fill this gap, we designed a survey to: (1) compare medical privacy preferences to privacy preferences in other areas; (2) measure willingness to pay the cost of additional privacy measures; and (3) measure willingness to accept the risks of not sharing information. METHODS: A total of 834 patients attending physician offices at 14 sites completed all or part of an anonymous questionnaire. RESULTS: Over 95% of patients were willing to share all their medical information with their treating physicians. There was no difference in willingness to share between primary care and specialty sites including psychiatry and an HIV clinic. In our survey, there was no difference in sharing preference between standard medical information and information with additional legal protections including genetic testing, drug/alcohol treatment and HIV results. Medical privacy was ranked lower than sharing social security and credit card numbers, but was deemed more private than other information including tax returns and handgun purchases. There was no statistical difference for any questions by site except for HIV/AIDS clinic patients ranking privacy of the medical record more important than reducing high medical costs and risk of medical errors (p < .05). Most patients were willing to spend a modest amount of additional time for privacy, but few were willing to pay more for additional medical privacy. Most patients were unwilling to take on additional risks to keep medical information hidden. CONCLUSIONS: Patients were very willing to share medical information with their providers. They were able to see the importance of sharing medical information to provide the best possible care. They were unwilling to hide information from providers if there was increased medical risk. Patients were willing to spend additional time for privacy, but most were unwilling to spend extra money. Sixty-eight percent of patients favored reducing medical costs over privacy.
[Mh] Termos MeSH primário: Confidencialidade
Privacidade Genética
Disseminação de Informação/métodos
Preferência do Paciente/economia
Atenção Primária à Saúde
[Mh] Termos MeSH secundário: Acesso à Informação
Adulto
Feminino
Seres Humanos
Masculino
Meia-Idade
Atenção Primária à Saúde/economia
Atenção Primária à Saúde/métodos
Encaminhamento e Consulta/economia
Risco
Inquéritos e Questionários
Estados Unidos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1705
[Cu] Atualização por classe:170526
[Lr] Data última revisão:
170526
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170207
[St] Status:MEDLINE
[do] DOI:10.1080/03007995.2017.1292229



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