Participant choices for return of genomic results in the eMERGE Network.
Genet Med
; 22(11): 1821-1829, 2020 11.
Article
in En
| MEDLINE
| ID: mdl-32669677
ABSTRACT
PURPOSE:
Secondary findings are typically offered in an all or none fashion when sequencing is used for clinical purposes. This study aims to describe the process of offering categorical and granular choices for results in a large research consortium.METHODS:
Within the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network, several sites implemented studies that allowed participants to choose the type of results they wanted to receive from a multigene sequencing panel. Sites were surveyed to capture the details of the implementation protocols and results of these choices.RESULTS:
Across the ten eMERGE sites, 4664 participants including adolescents and adults were offered some type of choice. Categories of choices offered and methods for selecting categories varied. Most participants (94.5%) chose to learn all genetic results, while 5.5% chose subsets of results. Several sites allowed participants to change their choices at various time points, and 0.5% of participants made changes.CONCLUSION:
Offering choices that include learning some results is important and should be a dynamic process to allow for changes in scientific knowledge, participant age group, and individual preference.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Genome
/
Electronic Health Records
Type of study:
Guideline
Limits:
Adolescent
/
Adult
/
Humans
Language:
En
Journal:
Genet Med
Journal subject:
GENETICA MEDICA
Year:
2020
Document type:
Article
Affiliation country:
United States