Practices and policies of clinical exome sequencing providers: analysis and implications.
Am J Med Genet A
; 161A(5): 935-50, 2013 May.
Article
en En
| MEDLINE
| ID: mdl-23610049
ABSTRACT
Exome and whole genome sequencing (ES/WGS) offer potential advantages over traditional approaches to diagnostic genetic testing. Consequently, use of ES/WGS in clinical settings is rapidly becoming commonplace. Yet there are myriad moral, ethical, and perhaps legal implications attached to the use of ES and health care professionals and institutions will need to consider these implications in the context of the varied practices and policies of ES service providers. We developed "core elements" of content and procedures for informed consent, data sharing, and results management and a quantitative scale to assess the extent to which research protocols met the standards established by these core elements. We then used these tools to evaluate the practices and policies of each of the 6 U.S. CLIA-certified labs offering clinical ES. Approaches toward informed consent, data sharing, and results return vary widely among ES providers as do the overall potential merits and disadvantages of each, and more importantly, the balance between the two.
Texto completo:
1
Base de datos:
MEDLINE
Asunto principal:
Pautas de la Práctica en Medicina
/
Análisis de Secuencia de ADN
/
Difusión de la Información
/
Exoma
/
Consentimiento Informado
Tipo de estudio:
Guideline
/
Prognostic_studies
País/Región como asunto:
America do norte
Idioma:
En
Revista:
Am J Med Genet A
Asunto de la revista:
GENETICA MEDICA
Año:
2013
Tipo del documento:
Article