Table 1. Discussion Guide Topics.
FIRST SATURDAY | SECOND SATURDAY |
---|---|
| |
MORNING | MORNING |
Overview of biobanking Genetics | Return of your research results |
| |
Genetics—what comes to mind | Interest in group results |
Genetic research—what comes to mind | Interest in individual results |
Reasons people participate in a biobank | Interest and disinterest in certain results |
Reasons people do not participate in a biobank | Who should, or should not, decide whether to return results |
How you feel about participating in a biobank | How you feel about participating in a biobank |
| |
AFTERNOON | AFTERNOON |
Biobank-based genetic research | Return of your child's research results |
| |
Informed consent—information needed | Interest in group results |
Giving broad consent | Interest in individual results |
Who is trusted, and not trusted, to protect privacy | Interest and disinterest in certain results |
Data sharing with other researchers | Who should, or should not, decide whether to return results |
How you feel about participating in a biobank | Whether child should be told parents have results |
How you feel about your child participating in a biobank |
This table is modified from BLOCKED.