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1.
Hum Genet ; 137(8): 583-591, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30116956

RESUMO

The regulation of genomic data sharing in Australia is a confusing mix of common law, legislation, ethical guidelines, and codes of practice. Beyond privacy laws, which only apply to genomic data that meets the definition of personal information, the key regulatory lever is the National Health and Medical Research Council (NHMRC) National Statement for Ethical Conduct in Human Research ("National Statement") (2007). Compliance with the National Statement is a requirement for institutions to apply to the NHMRC for funding, and includes-among other things-requirements for review of most genomic research by Human Research Ethics Committees. The sections of the National Statement specifying requirements for research with human genomic data are currently under review, including proposed new requirements addressing the return of genetic research findings and oversight of transfer agreements. Ensuring the willingness of Australians to donate their genomic information and participate in medical research will require clarification and harmonisation of the applicable regulatory framework, along with reforms to ensure that these regulations reflect the conditions necessary to promote ongoing public trust in researchers and institutions.


Assuntos
Bioética , Bases de Dados Genéticas , Pesquisa em Genética , Genômica , Disseminação de Informação , Austrália , Bases de Dados Genéticas/ética , Bases de Dados Genéticas/normas , Pesquisa em Genética/ética , Pesquisa em Genética/legislação & jurisprudência , Genômica/ética , Genômica/métodos , Humanos , Disseminação de Informação/ética , Disseminação de Informação/legislação & jurisprudência , Disseminação de Informação/métodos
2.
Hum Genet ; 137(8): 593, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-30136006

RESUMO

This article was inadvertently published under a draft title.

3.
Methods Mol Biol ; 1590: 99-112, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28353264

RESUMO

This chapter examines the ethical principles and governance frameworks for stem cell banks. Good governance of stem cell banks should balance facilitation of the clinical use of stem cells with the proper respect and protection of stem cell sample providers and stem cell recipients and ensure compliance with national regulatory requirements to foster public trust in the use of stem cell technology. Stem cell banks must develop with regard to the science, the needs of scientists, and the requirements of the public, which will benefit from this science. Given the international reach of this promising research and its clinical application, it is necessary for stem cell bank governance frameworks to be harmonized across jurisdictions.


Assuntos
Bancos de Espécimes Biológicos/ética , Bancos de Espécimes Biológicos/normas , Células-Tronco/citologia , Animais , Humanos
5.
J Bioeth Inq ; 11(3): 301-6, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24965440

RESUMO

International transfers of human biological material (biospecimens) and data are increasing, and commentators are starting to raise concerns about how donor wishes are protected in such circumstances. These exchanges are generally made under contractual material transfer agreements (MTAs). This paper asks what role, if any, should research ethics committees (RECs) play in ensuring legal and ethical conduct in such exchanges. It is recommended that RECs should play a more active role in the future development of best practice MTAs involving exchange of biospecimens and data and in monitoring compliance.


Assuntos
Pesquisa Biomédica/ética , Comitês de Ética em Pesquisa , Contrato de Transferência de Pacientes , Ética em Pesquisa , Humanos
6.
Appl Transl Genom ; 3(4): 116-9, 2014 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-27294026

RESUMO

Data sharing is increasingly becoming an essential component of clinical practice and biomedical research. The debate has shifted from whether or not to exchange data to how best to achieve optimal sharing. This raises new ethical and legal challenges, particularly with regard to consent and privacy. This article discusses recent developments in the formulation of best practice guidelines for data sharing. Particular attention is focused on the Global Alliance for Genomics and Health (GA4GH) draft Framework of Conduct for Data Sharing.

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