Recommendations for ethical approaches to genotype-driven research recruitment.
Hum Genet
; 131(9): 1423-31, 2012 Sep.
Article
en En
| MEDLINE
| ID: mdl-22622788
ABSTRACT
Recruiting research participants based on genetic information generated about them in a prior study is a potentially powerful way to study the functional significance of human genetic variation. However, it also presents significant ethical challenges that, to date, have received only minimal consideration. We convened a multi-disciplinary workshop to discuss key issues relevant to the conduct and oversight of genotype-driven recruitment and to translate those considerations into practical policy recommendations. Workshop participants were invited from around the US, and included genomic researchers and study coordinators, research participants, clinicians, bioethics scholars, experts in human research protections, and government representatives. Discussion was directed by experienced facilitators and informed by empirical data collected in a national survey of IRB chairs and in-depth interviews with research participants in studies where genotype-driven recontact occurred. A high degree of consensus was attained on the resulting seven recommendations, which cover informed consent disclosures and choices, the process for how and by whom participants are recontacted, the disclosure of individual genetic research results, and the importance of tailoring approaches based on specific contextual factors. These recommendations are intended to represent a balanced approach-protecting research participants, yet avoiding overly restrictive policies that hinder advancement on important scientific questions.
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Selección de Personal
/
Ética
/
Genotipo
Tipo de estudio:
Guideline
/
Qualitative_research
Límite:
Humans
País/Región como asunto:
America do norte
Idioma:
En
Revista:
Hum Genet
Año:
2012
Tipo del documento:
Article
País de afiliación:
Estados Unidos