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1.
Hum Genomics ; 15(1): 12, 2021 02 10.
Artigo em Inglês | MEDLINE | ID: mdl-33568209

RESUMO

This letter is the Human Genome Organisation's summary reaction to the 2020 COVID-19 pandemic. It identifies key areas for genomics research, and areas in which genomic scientists can contribute to a global response to the pandemic. The letter has been reviewed and endorsed by the HUGO Committee on Ethics, Law and Society (CELS) and the HUGO Council.


Assuntos
/genética , Sociedades Científicas , /epidemiologia , Genômica/organização & administração , Projeto Genoma Humano , Humanos , Disseminação de Informação , Organizações sem Fins Lucrativos , Pandemias
3.
Camb Q Healthc Ethics ; : 1-14, 2020 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-32498725

RESUMO

During the 2020 COVID-19 pandemic, open science has become central to experimental, public health, and clinical responses across the globe. Open science (OS) is described as an open commons, in which a right to science renders all possible scientific data for everyone to access and use. In this common space, capitalist platforms now provide many essential services and are taking the lead in public health activities. These neoliberal businesses, however, have a problematic role in the capture of public goods. This paper argues that the open commons is a community of rights, consisting of people and institutions whose interests mutually support the public good. If OS is a cornerstone of public health, then reaffirming the public good is its overriding purpose, and unethical platforms ought to be excluded from the commons and its benefits.

4.
Hastings Cent Rep ; 50(1): 46, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-32068278

RESUMO

The writer responds to the article "Human-Animal Chimeras: The Moral Insignificance of Uniquely Human Capacities," by Julian J. Koplin, in the September-October 2019 issue of the Hastings Center Report.


Assuntos
Quimera , Princípios Morais , Animais , Humanos
5.
J Med Ethics ; 46(9): 632-633, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32075867

RESUMO

Johnson and Degeling have recently enquired whether one health (OH) requires a comprehensive normative framework, concluding that such a framework, while not necessary, may be helpful. In this commentary, we provide a context for this debate, and describe how pragmatism has been predominant in the OH literature. We nevertheless argue that articulating a comprehensive normative theory to ground OH practice might clear existing vagueness and provide stronger guidance in relevant health dilemmas. A comprehensive theory will also be needed eventually to ground notions such as universal good. We, thus, call for the systematic articulation of a comprehensive, metaethical theory, concomitantly with already ongoing normative work.

6.
Bioethics ; 34(1): 114-122, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31448428

RESUMO

The tobacco industry's involvement in the electronic cigarette research that informs public health policy is controversial. On the one hand, some are concerned that their involvement presents conflicts of interest that bias research outputs and invalidate the policies that use them. On the other hand, some have argued that the tobacco industry may support valid research and contribute to the goals of public health, for instance, if the interests of the e-cigarette industry could be part of a tobacco smoking cessation policy. We approach this debate from the ethical perspective of the public interest and the public good, considering how legitimate researchers can square their expert opinion with validating tobacco industry-funded research, given the perfidy of the tobacco industry and paucity of robust, conclusive evidence on the public health impacts of liberalizing e-cigarette use.


Assuntos
Conflito de Interesses , Sistemas Eletrônicos de Liberação de Nicotina , Ética em Pesquisa , Saúde Pública/ética , Política Pública , Indústria do Tabaco/ética , Viés , Prova Pericial , Humanos , Pesquisadores/ética
7.
Hum Genomics ; 13(1): 24, 2019 05 29.
Artigo em Inglês | MEDLINE | ID: mdl-31142362

RESUMO

The HUGO Committee on Ethics, Law and Society (CELS) undertook a Working Group exploration of the key ethical issues arising from genome sequencing in 2013. The Imagined Futures paper the group subsequently published proposed points to consider when applying genomic bioinformatics to data repositories used in genomic medicine and research ( http://www.hugo-international.org/Resources/Documents/CELS_Article-ImaginedFutures_2014.pdf ). Given the ever-increasing power to sequence the human genome rapidly and inexpensively-as well as trends toward "Big Data" and "Open Science"-we take this opportunity to update and refine the key findings of that paper.


Assuntos
Biologia Computacional/tendências , Genoma Humano/genética , Genômica/tendências , Sequenciamento Completo do Genoma/tendências , Big Data , Mapeamento Cromossômico , Humanos
9.
Camb Q Healthc Ethics ; 26(4): 577-591, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28937342

RESUMO

Suppose that a colleague proposed a fantastic experiment: to introduce human stem cells into a neonatal mouse so that its entire brain developed into "human-like" neuronal structures. The colleague claimed it would still be a mouse, and that its chimeric brain would be nothing like a "human" one. It would not, as a result, have a moral status beyond its nonhuman animal origins. Thus, the "human neuron mouse" would allow scientists to tinker with human-like neurology in ways that would be precluded if it were a human being, and that would promise to lead to substantial understanding of the destructive and incurable brain diseases that befall humanity. The colleague does admit, however, that for reasons of comparative fidelity, experiments in human patients would be scientifically preferable, although in this case, neither ethically justified nor legally permitted. For that reason, it might be desirable to create a human brain in a nonhuman primate, where it would be more likely that significant human-like neuronal development would occur, but still could not become a person. This article explores the significance of a "human neuron chimpanzee," and suggests that contradictions in the design of the experiment make it unethical to proceed in either murine or primate models.


Assuntos
Encéfalo/fisiologia , Quimera/fisiologia , Ética em Pesquisa , Células-Tronco Neurais/transplante , Primatas , Transplante de Células-Tronco/ética , Animais , Encéfalo/crescimento & desenvolvimento , Humanos , Camundongos
10.
Hum Genomics ; 11(1): 20, 2017 08 29.
Artigo em Inglês | MEDLINE | ID: mdl-28851444

RESUMO

This paper considers the tensions created in genomic research by public and private for-profit ideals. Our intent is to strengthen the public good at a time when doing science is strongly motivated by market possibilities and opportunities. Focusing on the emergence of gene editing, and in particular CRISPR, we consider how commercialisation encourages hype and hope-a sense that only promise and idealism can achieve progress. At this rate, genomic research reinforces structures that promote, above all else, private interests, but that may attenuate conditions for the public good of science. In the first part, we situate genomics using the aphorism that 'on the shoulders of giants we see farther'; these giants are infrastructures and research cultures rather than individual 'heroes' of science. In this respect, private initiatives are not the only pivot for successful discovery, and indeed, fascination in those could impinge upon the fundamental role of public-supported discovery. To redress these circumstances, we define the extent to which progress presupposes research strategies that are for the public good. In the second part, we use a 'falling giant' narrative to illustrate the risks of over-indulging for-profit initiatives. We therefore offer a counterpoint to commercialised science, using three identifiable 'giants'-scientists, publics and cultures-to illustrate how the public good contributes to genomic discovery.


Assuntos
Pesquisa Biomédica , Edição de Genes/ética , Genética Médica , Genômica/métodos , Opinião Pública , Comunicação , Humanos
11.
Br Med Bull ; 122(1): 109-122, 2017 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-28398474

RESUMO

Background: Due to decreasing cost, and increasing speed and precision, genomic sequencing in research is resulting in the generation of vast amounts of genetic data. The question of how to manage that information has been an area of significant debate. In particular, there has been much discussion around the issue of 'secondary findings' (SF)-findings unrelated to the research that have diagnostic significance. Sources of data: The following includes ethical commentaries, guidelines and policies in respect to large-scale clinical genomics studies. Areas of agreement: Research participant autonomy and their informed consent are paramount-policies around SF must be made clear and participants must have the choice as to which results they wish to receive, if any. Areas of controversy: While many agree that clinically 'actionable' findings should be returned, some question whether they should be actively sought within a research protocol. Growing points: SF present challenges to a growing field; diverse policies around their management have the potential to hinder collaboration and future research. Areas timely for developing research: The impact of returning SF and accurate estimates of their clinical utility are needed to inform future protocol design.


Assuntos
Pesquisa Biomédica , Genômica , Gestão da Informação , Comportamento de Escolha , Genômica/ética , Genômica/normas , Guias como Assunto , Humanos , Achados Incidentais , Consentimento Livre e Esclarecido
12.
Br Med Bull ; 122(1): 17-29, 2017 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-28334154

RESUMO

Background: The avalanche of commentaries on CRISPR-Cas9 technology, a bacterial immune system modified to recognize any short DNA sequence, cut it out, and insert a new one, has rekindled hopes for gene therapy and other applications and raised criticisms of engineering genes in future generations. Sources of data: This discussion draws on articles that emphasize ethics, identified partly through PubMed and Google, 2014-2016. Areas of agreement: CRISPR-Cas9 has taken the pace and prospects for genetic discovery and applications to a high level, stoking anticipation for somatic gene engineering to help patients. We support a moratorium on germ line manipulation. Areas of controversy: We place increased emphasis on the principle of solidarity and the public good. The genetic bases of some diseases are not thoroughly addressable with CRISPR-Cas9. We see no new ethical issues, compared with gene therapy and genetic engineering in general, apart from the explosive rate of findings. Other controversies include eugenics, patentability and unrealistic expectations of professionals and the public. Growing points: Biggest issues are the void of research on human germ cell biology, the appropriate routes for oversight and transparency, and the scientific and ethical areas of reproductive medicine. Areas timely for developing research: The principle of genomic solidarity and priority on public good should be a lens for bringing clarity to CRISPR debates. The valid claim of genetic exceptionalism supports restraint on experimentation in human germ cells, given the trans-generational dangers and the knowledge gap in germ cell biology.


Assuntos
Sistemas CRISPR-Cas , Repetições Palindrômicas Curtas Agrupadas e Regularmente Espaçadas , Edição de Genes/ética , Engenharia Genética/ética , Edição de Genes/métodos , Terapia Genética/ética , Humanos
13.
J Bioeth Inq ; 14(2): 261-273, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28247202

RESUMO

Cell and tissue-based products, such as autologous adult stem cells, are being prescribed by physicians across the world for diseases and illnesses that they have neither been approved for or been demonstrated as safe and effective in formal clinical trials. These doctors often form part of informal transnational networks that exploit differences and similarities in the regulatory systems across geographical contexts. In this paper, we examine the regulatory infrastructure of five geographically diverse but socio-economically comparable countries with the aim of identifying similarities and differences in how these products are regulated and governed within clinical contexts. We find that while there are many subtle technical differences in how these regulations are implemented, they are sufficiently similar that it is difficult to explain why these practices appear more prevalent in some countries and not in others. We conclude with suggestions for how international governance frameworks might be improved to discourage the exploitation of vulnerable patient populations while enabling innovation in the clinical application of cellular therapies.


Assuntos
Células-Tronco Adultas/transplante , Ética Médica , Regulamentação Governamental , Cooperação Internacional , Transplante de Células-Tronco , Transplante Autólogo , Austrália , Comparação Transcultural , Humanos , Japão , Princípios Morais , Singapura , Transplante de Células-Tronco/ética , Transplante de Células-Tronco/legislação & jurisprudência , Transplante Autólogo/ética , Transplante Autólogo/legislação & jurisprudência , Reino Unido , Estados Unidos , Populações Vulneráveis
14.
PLoS One ; 12(1): e0170967, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28129409

RESUMO

BACKGROUND: One Health (OH) is an interdisciplinary collaborative approach to human and animal health that aims to break down conventional research and policy 'silos'. OH has been used to develop strategies for zoonotic Emerging Infectious Diseases (EID). However, the ethical case for OH as an alternative to more traditional public health approaches is largely absent from the discourse. To study the ethics of OH, we examined perceptions of the human health and ecological priorities for the management of zoonotic EID in the Southeast Asia country of Singapore. METHODS: We conducted a mixed methods study using a modified Delphi technique with a panel of 32 opinion leaders and 11 semi-structured interviews with a sub-set of those experts in Singapore. Panellists rated concepts of OH and priorities for zoonotic EID preparedness planning using a series of scenarios developed through the study. Interview data were examined qualitatively using thematic analysis. FINDINGS: We found that panellists agreed that OH is a cross-disciplinary collaboration among the veterinary, medical, and ecological sciences, as well as relevant government agencies encompassing animal, human, and environmental health. Although human health was often framed as the most important priority in zoonotic EID planning, our qualitative analysis suggested that consideration of non-human animal health and welfare was also important for an effective and ethical response. The panellists also suggested that effective pandemic planning demands regional leadership and investment from wealthier countries to better enable international cooperation. CONCLUSION: We argue that EID planning under an OH approach would benefit greatly from an ethical ecological framework that accounts for justice in human, animal, and environmental health.


Assuntos
Doenças Transmissíveis Emergentes/epidemiologia , Saúde Global/ética , Saúde Pública/ética , Zoonoses/epidemiologia , Animais , Doenças Transmissíveis Emergentes/psicologia , Saúde Ambiental/ética , Humanos , Pandemias , Singapura , Zoonoses/psicologia
15.
Br Med Bull ; 118(1): 5-15, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-27151955

RESUMO

BACKGROUND: Systematic reviews analysing the influence of funding on the conduct of research have shown how Conflicts of Interest (COIs) create bias in the production and dissemination of data. SOURCES OF DATA: The following is a critical analysis of current opinions in respect to COIs created by industry funding of medical research in academic institutions. AREAS OF AGREEMENT: Effective mechanisms are necessary to manage COIs in medical research, and to prohibit COIs that clearly affect validity of research conduct and outcomes. AREAS OF CONTROVERSY: While most hold that industry investment in university research is not a barrier to good science, there are questions about how securing funding opportunities might be prioritized over the risks of potential COIs. It is argued that COIs are inherent risks to research integrity, requiring the strengthening of current governance frameworks. GROWING POINTS: The focus on COIs, created by the ostensibly categorical actions of industry, challenges the evolving research priorities within academic institutions. AREAS TIMELY FOR DEVELOPING RESEARCH: Less well-defined COIs are equally culpable to financial ones, in terms of the systemic damage they do to science. So, are they appropriately managed as risks within university research settings?


Assuntos
Pesquisa Biomédica/economia , Pesquisa Biomédica/ética , Indústria Farmacêutica/economia , Indústria Farmacêutica/ética , Apoio à Pesquisa como Assunto/ética , Academias e Institutos/economia , Academias e Institutos/ética , Códigos de Ética , Conflito de Interesses/economia , Humanos , Disseminação de Informação/ética , Indústria do Tabaco/economia , Indústria do Tabaco/ética
16.
Clin Psychopharmacol Neurosci ; 14(1): 17-25, 2016 Feb 29.
Artigo em Inglês | MEDLINE | ID: mdl-26792036

RESUMO

Therapeutic misconception (TM) denotes the phenomenon in which research subjects conflate research purpose, protocols and procedures with clinical treatment. We examined the prevalence, contributory factors, clinical associations, impact, and collated solutions on TM within psychiatric research, and made suggestions going ahead. Literature search for relevant empirical research papers was conducted until February 2015. Eighty-eight reports were extracted, of which 31 were selected, summarised into different headings for discussion of implications and collated solutions of TM. We found variable and high rates of TM (ranging from 12.5% to 86%) in some psychiatry research populations. Contributory factors to TM included perceived medical roles of researchers, media, research setting and subject factors. Greater TM in affective, neurodevelopmental and psychotic spectrum conditions were associated with demographic variables (such as lower education, increased age), clinical factors (such as poor insight, cognitive deficits, increased symptoms, poorer self-rated quality of health), and social functioning (such as decreased independence). Inattention to TM may lead to frustration, negative impression and abandonment of participation in psychiatry research. Strategies such as the employment of a neutral educator during the informed consent process and education modules may be effective in addressing TM. Further research is warranted to examine the different TM facets, specific clinical correlates and more effective management strategies.

17.
Monash Bioeth Rev ; 33(4): 238-57, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26670686

RESUMO

Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the 'public good' framework of UK Biobank. These diametric models have both featured 'the public interest' as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why are explained, and the effects this has on conditions for participation are critiqued, before reflecting on how each model might have an impact on reproductive health research.


Assuntos
Bancos de Espécimes Biológicos/ética , Ética em Pesquisa , Invenções/ética , Saúde Reprodutiva/ética , Técnicas de Reprodução Assistida/ética , Difusão de Inovações , Pesquisa em Genética/ética , Humanos , Consentimento Livre e Esclarecido/ética , Saúde Pública
18.
Bioethics ; 29(8): 588-96, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25675899

RESUMO

Pandemic plans recommend phases of response to an emergent infectious disease (EID) outbreak, and are primarily aimed at preventing and mitigating human-to-human transmission. These plans carry presumptive weight and are increasingly being operationalized at the national, regional and international level with the support of the World Health Organization (WHO). The conventional focus of pandemic preparedness for EIDs of zoonotic origin has been on public health and human welfare. However, this focus on human populations has resulted in strategically important disciplinary silos. As the risks of zoonotic diseases have implications that reach across many domains outside traditional public health, including anthropological, environmental, and veterinary fora, a more inclusive ecological perspective is paramount for an effective response to future outbreaks.


Assuntos
Doenças Transmissíveis Emergentes , Planejamento em Desastres , Surtos de Doenças , Saúde Pública , Animais , Ásia Sudeste , Biodiversidade , Planejamento em Desastres/normas , Planejamento em Desastres/tendências , Análise Ética , Humanos , Influenza Humana/epidemiologia , Pandemias , Singapura , Zoonoses
19.
J Agric Environ Ethics ; 28(6): 1011-1032, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-32214867

RESUMO

The 2013 Ebola virus outbreak in West Africa, as of writing, is declining in reported human cases and mortalities. The resulting devastation caused highlights how health systems, in particular in West Africa, and in terms of global pandemic planning, are ill prepared to react to zoonotic pathogens. In this paper we propose One Health as a strategy to prevent zoonotic outbreaks as a shared goal: that human and Great Ape vaccine trials could benefit both species. Only recently have two phase 2/3 Ebola human vaccine trials been started in West Africa. This paper argues for a conceptual change in pandemic preparedness. We first discuss the ethics of One Health. Next, we focus on the current Ebola outbreak and defines its victims. Third, we present the notion of a 'shared benefit' approach, grounded in One Health, and argue for the vaccination of wild apes in order to protect both apes and humans. We believe that a creation of such inter-species immunity is an exemplar of One Health, and that it is worth pursuing as a coextensive public health approach.

20.
J Med Ethics ; 41(3): 258-62, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24570395

RESUMO

In this paper, the authors consider the idea of the public biobank governance framework with respect to the innovative paradigm of One Health. The One Health initiative has been defined as an integrative and interdisciplinary effort to improve the lives and well-being of human beings and non-human animals, as well as to preserve the environment. Here, we use this approach as a starting presumption with respect to institutional design. We examine the theoretical and legal framework underlying the concept of biobanking that, being public orientated, is for the public good. We suggest that this account of research practice does not ethically correlate with One Health principles. Instead, we argue that One Health requires a model of biobanking that is based on universal goods, that is, goods that serve human beings as well as non-human animals and the environment, and which we define in detail. Our purpose is to begin a discussion on how One Health principles might be implemented in health initiatives.


Assuntos
Bancos de Espécimes Biológicos , Bioterrorismo/prevenção & controle , Surtos de Doenças/prevenção & controle , Saúde Global , Saúde Pública , Zoonoses/prevenção & controle , África , Terapia Assistida com Animais , Animais , Bancos de Espécimes Biológicos/normas , Bancos de Espécimes Biológicos/tendências , Canadá , Europa (Continente) , Saúde Global/ética , Saúde Global/normas , Saúde Global/tendências , Doença pelo Vírus Ebola/prevenção & controle , Humanos , Saúde Pública/ética , Saúde Pública/normas , Saúde Pública/tendências , Reino Unido , Estados Unidos
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