Table 2.

Recommendations for planners of genomic databases.

1. Take concerns especially seriously if enrolling children.

• Prompt parents to consider the child’s future attitudes towards being enrolled in a genomic database.

• Where identity-based concerns about research are common among affected adults, track data to facilitate withdrawal and provide notice of withdrawal option at age of majority.

2. Incorporate community engagement representing diverse perspectives.

• Consider enlisting community members, particularly newly-turned-adults for pediatric databases, as advisors regarding areas of sensitivity or potential misunderstandings.

• Engage affected individuals who represent different perspectives, and survey discourse on social media platforms, to build and retain trust and inform messaging about the purposes of the data resource.

• Conduct targeted engagement of likely opponents with a goal of respectful listening, not conversion.

3. Adopt a wide view of potential research goals.

• Consider constructing the database to facilitate multiple kinds of research to comprehensively address the needs/flourishing of those affected by included condition(s).