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Ethical dimensions of genetics in pediatric neurology: a look into the future.

https://arctichealth.org/en/permalink/ahliterature190722
Source
Semin Pediatr Neurol. 2002 Mar;9(1):53-61
Publication Type
Article
Date
Mar-2002
Author
Denise M Avard
Bartha M Knoppers
Author Affiliation
Centre de recherche en droit public, Université de Montréal, Quebec, Canada.
Source
Semin Pediatr Neurol. 2002 Mar;9(1):53-61
Date
Mar-2002
Language
English
Publication Type
Article
Keywords
Canada
Child
Databases, Genetic - legislation & jurisprudence
Ethics, Medical
Genetic Therapy - legislation & jurisprudence
Genetics - legislation & jurisprudence
Humans
Informed Consent - legislation & jurisprudence
Nervous System Diseases - genetics
United States
Abstract
Health care providers and families with children who participate in genetic research or who need specialized genetic services, including genetic testing, will encounter not only medical but difficult social, ethical, and legal questions surrounding pediatric genetic neurology. Children are often at the center of much of the genetic revolution and their unique needs raise special concerns about the risks and benefits associated with genetic research, particularly the issues of consent, the use of genetic databases, and gene therapy. Moreover, genetic research and testing raise important psychosocial risks. In this article we discuss some of the benefits and consequences of genetic technologies for children in relation to national and international guidelines. In particular, physicians, policy-makers, and families should be knowledgeable about the guidelines and have a good understanding of the psychosocial and ethical issues associated with genetics in pediatric neurology.
PubMed ID
11931127 View in PubMed
Less detail

Family privacy and death--Antigone, war, and medical research.

https://arctichealth.org/en/permalink/ahliterature176331
Source
N Engl J Med. 2005 Feb 3;352(5):501-5
Publication Type
Article
Date
Feb-3-2005

Genetic databases and consent for use of medical records.

https://arctichealth.org/en/permalink/ahliterature176308
Source
Community Genet. 2004;7(4):173-5
Publication Type
Article
Date
2004
Author
J K M Gevers
Author Affiliation
Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands. j.k.gevers@amc.uva.nl
Source
Community Genet. 2004;7(4):173-5
Date
2004
Language
English
Publication Type
Article
Keywords
Databases, Genetic - legislation & jurisprudence
Humans
Iceland
Informed Consent - legislation & jurisprudence
Medical Records - legislation & jurisprudence
Supreme Court Decisions
Abstract
The legislation on the Icelandic genetic database provides for an opting-out system for the collection of encoded medical information from individual medical records. From the beginning this has raised criticism, in Iceland itself and abroad. The Supreme Court has now decided that this approach of presumed consent is not unconstitutional per se, but that there are not sufficient safeguards to ensure that the information collected is not traceable to individuals. The decision of the court is of importance for the debate (at national and international level) on the legal and ethical aspects of population-based genetic databases. Furthermore, it is interesting because it recognizes the right of close relatives of a deceased person to oppose the collection and use of his or her medical data for genetic research, at least as long as these data may still be identifiable.
PubMed ID
15692191 View in PubMed
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Genomic Databases and Biobanks in Denmark.

https://arctichealth.org/en/permalink/ahliterature280292
Source
J Law Med Ethics. 2015;43(4):743-53
Publication Type
Article
Date
2015
Author
Mette Hartlev
Source
J Law Med Ethics. 2015;43(4):743-53
Date
2015
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Biological Specimen Banks - legislation & jurisprudence
Confidentiality - legislation & jurisprudence
Databases, Genetic - legislation & jurisprudence
Denmark
Genetic Research - legislation & jurisprudence
Humans
Abstract
Biobanking in Denmark is regulated via patients' rights laws, data protection laws, and research ethics reviews. Danish law recognizes tissue samples as personal data for purposes of the data protection laws, meaning research with tissue samples may be subject to research ethics review, data protection laws, and patients' rights requirements depending on the circumstances of collection. However, research on information gained through whole genome sequencing is subject only to data protection laws, despite the similarity in the nature of the information. The regulatory framework treats biobank samples collected from patients differently than samples collected from research participants, particularly with respect to autonomy. Importantly, biobanks established for future unspecified research are not subject to research ethics review. Biobank-based research has gained more prominence on the national level recently, and the potential for a less fragmented and more consistent regulatory approach may emerge from this attention.
PubMed ID
26711414 View in PubMed
Less detail

Icelandic database shelved as court judges privacy in peril.

https://arctichealth.org/en/permalink/ahliterature180137
Source
Nature. 2004 May 13;429(6988):118
Publication Type
Article
Date
May-13-2004

8 records – page 1 of 1.