Document Detail


Ethics in prevention science involving genetic testing.
MedLine Citation:
PMID:  23354905     Owner:  NLM     Status:  MEDLINE    
Abstract/OtherAbstract:
The Human Genome Project and rapid technological advances in genomics have begun to enrich prevention science's contributions to understanding the role of genetic factors in the etiology, onset and escalation of mental disorders, allowing for more precise descriptions of the interplay between genetic and non-genetic influences. Understanding of ethical challenges associated with the integration of genetic data into prevention science has not kept pace with the rapid increase in the collection and storage of genetic data and dissemination of research results. This article discusses ethical issues associated with (1) decisions to withhold or disclose personal genetic information to participants; (2) implications of recruitment and data collection methods that may reveal genetic information of family members; and the (3) nature and timing of informed consent. These issues are presented within the contexts of adult and pediatric research, longitudinal studies, and use of biobanks for storage of genetic materials. Recommendations for research ethics decision-making are provided. The article concludes with a section on justice and research burdens and the unique ethical responsibilities of prevention scientists to ensure the new genomic science protects the informational rights of participants, their families and communities.
Authors:
Celia B Fisher; Erika L Harrington McCarthy
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Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Prevention science : the official journal of the Society for Prevention Research     Volume:  14     ISSN:  1573-6695     ISO Abbreviation:  Prev Sci     Publication Date:  2013 Jun 
Date Detail:
Created Date:  2013-04-22     Completed Date:  2013-10-21     Revised Date:  2014-06-03    
Medline Journal Info:
Nlm Unique ID:  100894724     Medline TA:  Prev Sci     Country:  United States    
Other Details:
Languages:  eng     Pagination:  310-8     Citation Subset:  IM    
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MeSH Terms
Descriptor/Qualifier:
Genetic Testing / ethics*
Humans
Preventive Medicine*
Grant Support
ID/Acronym/Agency:
R25 DA031608/DA/NIDA NIH HHS
Comments/Corrections

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