Table 4.

Major findings and considerations for database stewards

Sub-theme	Finding(s) from interviews	Recommendations
Theme 1: Use of existing databases for genetics research
Time spent	Primary data collection was described as more time-consuming and costly than existing database use	Efforts focused on building accessible databases allow researchers to focus time and funding on analysis, as opposed to primary data collection
Financial cost
Theme 2: Importance of ease of access
Familiarity	Familiarity was described in terms of a relationship with a specific person, rather than the database itself	Investing resources in long-term employees who support researchers by facilitating access, acclimating them with the data, and answering questions is valuable
Efficiency	Efficiency was described as the ability to spend time on research, rather than administrative matters such as legal agreements	Limit the burdensome nature of legal negotiations for the researcher and ensure that all “rules” are equitably applied across researchers
Theme 3: Importance of specific data features
Size	The number of contributors represented, and the phenotypic information included, were critical factors and sometimes even drove research questions	Enabling efforts to encourage and facilitate datasharing in widely accessible databases should be a key component of balancing access for researchers
Phenotypes
Demographic diversity	Interviewees described not having the choice to select databases based on demographic diversity, due to the homogeny of existing cohorts, or incomplete demographic information. While this was seen as a limitation, it was a commonly accepted one.	Efforts to increase the diversity of participants represented in databases should focus on the enrollment of historically excluded communities at the point of data collection; support may be needed for researchers attempting to do research with diverse databases who might have additional data harmonization, computational, and analysis needs
Theme 4: Importance of data management support and downstream effects of selection
Integrity	Data stewards were relied upon to ensure integrity of databases	Ensuring data quality at the point of deposit, rather than assuming secondary users will or can do so, as well as supporting interoperability across data resources, are critical
Harmonization	Data harmonization was seen as a time-consuming chore that distracted from valuable research.
Storage	Some databases were hard to use due to vast data storage and computational infrastructure necessary to extract and analyze data	Supporting researchers with limited storage and computing infrastructure may help enable less well-resourced researchers