Public Perspectives on Investigative Genetic Genealogy: Findings from a National Focus Group Study.

BACKGROUND: Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes. METHODS: We conducted eight focus groups with members of the public (N = 72), sampled from four geographically diverse US regions, to explore general attitudes and perspectives regarding aspects of IGG practices, applications, and policies. Five major topics were explored in each focus group: when IGG should be used; who should perform IGG; how to approach consent for genetic database users; what systems of oversight should govern IGG practitioners; and whether to notify database users if their data are involved in law enforcement (LE) matching. RESULTS: Participants were supportive of IGG in most scenarios, especially for cold and violent cases. The favorable attitudes toward IGG were, however, tempered by distrust of law enforcement among some participants. All participants agreed that databases must inform users if IGG is allowed, but they did not agree on how individual database users should be allowed to opt out or whether to notify them if their data are involved in specific investigations. All participants agreed that IGG should be subject to some prescriptive guidelines, regulations, or accountability mechanisms. CONCLUSIONS: These findings suggest broad public support for IGG, and interest in developing systems of accountability for its practice. Our study provides useful insight for policy makers, genomic database stewards, law enforcement, and other stakeholders in IGG's practice, and suggests multiple directions for future research.

Cloud-based biomedical data storage and analysis for genomic research: Landscape analysis of data governance in emerging NIH-supported platforms.

The storage, sharing, and analysis of genomic data poses technical and logistical challenges that have precipitated the development of cloud-based computing platforms designed to facilitate collaboration and maximize the scientific utility of data. To understand cloud platforms' policies and procedures and the implications for different stakeholder groups, in summer 2021, we reviewed publicly available documents (N = 94) sourced from platform websites, scientific literature, and lay media for five NIH-funded cloud platforms (the All of Us Research Hub, NHGRI AnVIL, NHLBI BioData Catalyst, NCI Genomic Data Commons, and the Kids First Data Resource Center) and a pre-existing data sharing mechanism, dbGaP. Platform policies were compared across seven categories of data governance: data submission, data ingestion, user authentication and authorization, data security, data access, auditing, and sanctions. Our analysis finds similarities across the platforms, including reliance on a formal data ingestion process, multiple tiers of data access with varying user authentication and/or authorization requirements, platform and user data security measures, and auditing for inappropriate data use. Platforms differ in how data tiers are organized, as well as the specifics of user authentication and authorization across access tiers. Our analysis maps elements of data governance across emerging NIH-funded cloud platforms and as such provides a key resource for stakeholders seeking to understand and utilize data access and analysis options across platforms and to surface aspects of governance that may require harmonization to achieve the desired interoperability.

"They're Going to Zoom It": A Qualitative Investigation of Impacts and Coping Strategies During the COVID-19 Pandemic Among Older Adults.

Introduction: Older adults, who already have higher levels of social isolation, loneliness, and sedentary behavior, are particularly susceptible to negative impacts from social distancing mandates meant to control the spread of COVID-19. We sought to explore the physical, mental, and social health impacts of the pandemic on older adults and their coping techniques. Materials and Methods: We conducted 25 semi-structured interviews with a sub-sample of participants in an ongoing sedentary behavior reduction intervention. Interviews were recorded and transcribed, and iterative coding was used to extract key themes. Results: Most participants reported an increase in sedentary behavior due to limitations on leaving their home and increased free time to pursue seated hobbies (e.g., reading, knitting, tv). However, many participants also reported increased levels of intentional physical activity and exercise, particularly outdoors or online. Participants also reported high levels of stress and a large decrease in in-person social connection. Virtual connection with others through phone and video was commonly used to stay connected with friends and family, engage in community groups and activities, and cope with stress and social isolation. Maintenance of a positive attitude and perspective gained from past hardships was also an important coping strategy for many participants. Discussion: The COVID-19 pandemic and associated social distancing measures have impacted older adults' perceived levels of activity, stress, and social isolation, but many leveraged technology and prior life experiences to cope. These themes could inform future interventions for older adults dealing with chronic stress and isolation.