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2.
Camb Prism Precis Med ; 1: e23, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38550949

RESUMO

Clustered regularly interspaced short palindromic repeats and other genome editing technologies have the potential to transform the lives of people affected by genetic disorders for the better. However, it is widely recognised that they also raise large ethical and policy questions. The focus of this article is on how national genome editing policy might be developed in ways that give proper recognition to these big questions. The article first considers some of the regulatory challenges involved in dealing these big ethical and social questions, and also economic issues. It then reviews the outcomes of a series of major reports on genome editing from international expert bodies, with a particular focus on the work of the World Health Organization's expert committee on genome editing. The article then summarises five policy themes that have emerged from this review of the international reports together with a review of other literature, and the authors' engagement with members of the Australian public and with a wide range of experts across multiple disciplines. Each theme is accompanied by one to three pointers for policymakers to consider in developing genome editing policy.

3.
J Law Med ; 29(2): 322-336, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35819374

RESUMO

Heritable human genome editing is a form of modification of the human genome that will be inherited by progeny of the person whose DNA has been edited. Editing human genomes in ways that are heritable is currently prohibited in many countries throughout the world, including in Australia. This section starts with an examination of the historical backdrop to Australia's current laws relating to heritable human genome editing, with particular focus on how technological advances and community responses have shaped our legislative environment for innovative artificial reproductive technologies. The section then examines how community responses to current developments in heritable human genome editing might shape future law reform. The aim is to provide a foundation for examining how the future regulatory environment for heritable human genome editing in Australia might be shaped in ways that are responsive both to technological developments and to contemporary ethical norms and social values.


Assuntos
Edição de Genes , Genoma Humano , Austrália , Sistemas CRISPR-Cas , Humanos
4.
CRISPR J ; 3(6): 434-439, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33346718

RESUMO

In the view of many, heritable human genome editing (HHGE) harbors the remedial potential of ridding the world of deadly genetic diseases. A Hippocratic obligation, if there ever was one, HHGE is widely viewed as a life-sustaining proposition. The national go/no-go decision regarding the implementation of HHGE, however, must not, in the collective view of the authors, proceed absent thorough public engagement. A comparable call for an "extensive societal dialogue" was recently issued by the International Commission on the Clinical Use of Human Germline Genome Editing. In this communication, the authors lay out the foundational principles undergirding the formation, modification, and evaluation of public opinion. It is against this backdrop that the societal decision to warrant or enjoin the clinical conduct of HHGE will doubtlessly transpire.


Assuntos
Edição de Genes/ética , Edição de Genes/tendências , Sistemas CRISPR-Cas/genética , Repetições Palindrômicas Curtas Agrupadas e Regularmente Espaçadas , Genoma Humano , Células Germinativas , Humanos , Opinião Pública
8.
Public Underst Sci ; 22(4): 396-412, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-23833106

RESUMO

Scepticism about climate change now appears a pervasive social phenomenon. Research to date has examined the different forms that scepticism can take, from outright denial to general uncertainty. Less is known about what climate sceptics value and believe beyond their climate change doubt, as well as how "entrenched" such beliefs are. In response, this paper discusses research into public reactions to projected climate change in the Australian Capital Region. Using Q Methodology and qualitative data, it outlines five discourses of scepticism and explores the impact regional-scale climate scenarios and a deliberative forum had on these discourses. Results show that both forms of intervention stimulate "discourse migration" amongst research participants. However, migrations are rarely sustained, and sceptical positions are infrequently dispelled outright, suggesting the relationship between climate scepticism, broader beliefs, and the methods used to inform and debate about climate change, are pivotal to comprehending and addressing this issue.

9.
Soc Sci Med ; 68(4): 781-9, 2009 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-19095337

RESUMO

As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was 'Biobanking in British Columbia (BC)' and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities.


Assuntos
Pesquisa Biomédica/ética , Consentimento Livre e Esclarecido , Opinião Pública , Bancos de Tecidos/ética , Canadá , Confidencialidade/ética , Genômica/ética , Humanos
10.
Risk Anal ; 25(6): 1443-56, 2005 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-16506974

RESUMO

Assessing the social risks associated with climate change requires an understanding of how humans will respond because it affects how well societies will adapt. In the case of rapid or dangerous climate change, of particular interest is the potential for these responses to cross thresholds beyond which they become maladaptive. To explore the possibility of such thresholds, a series of climate change scenarios were presented to U.K. participants whose subjective responses were recorded via interviews and surveyed using Q methodology. The results indicate an initially adaptive response to climate warming followed by a shift to maladaptation as the magnitude of change increases. Beyond this threshold, trust in collective action and institutions was diminished, negatively impacting adaptive capacity. Climate cooling invoked a qualitatively different response, although this may be a product of individuals being primed for warming because it has dominated public discourse. The climate change scenarios used in this research are severe by climatological standards. In reality, the observed responses might occur at a lower rate of change. Whatever the case, analysis of subjectivity has revealed potential for maladaptive human responses, constituting a dangerous or rapid climate threshold within the social sphere.

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