"A Double-Edged Sword": A Brief History of Genomic Data Governance and Genetic Researcher Perspectives on Data Sharing.

As the federal government continues to expand upon and improve its data sharing policies over the past 20 years, complex challenges remain. Our interviews with U.S.

Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

Background: Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap.

A conceptual framework for clinical and translational virtual community engagement research.

Introduction: The COVID-19 pandemic accelerated a trend for clinical and translational community-engaged research in adapting to an increasingly virtual landscape. This requires a framework for engagement distinct from in-person research and program activities. We reflect on four case studies of community engagement activities that inform a conceptual framework to better integrate the virtual format into community-engaged research reflecting key tenets of health equity and antiracist praxis.

"Extremely slow and capricious": A qualitative exploration of genetic researcher priorities in selecting shared data resources.

Purpose: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances.

Methods: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

Background: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared.

Objective: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology.

Reported Interest in Notification Regarding Use of Health Information and Biospecimens.

This study describes reported interest in notification regarding use of personal health information and biospecimens for research and preference-associated factors among a sample of the US population in 2019.

The public's comfort with sharing health data with third-party commercial companies.

Healthcare systems are using big data-driven methods to realize the vision of learning health systems and improve care quality. In so doing, many are partnering with third-party commercial companies to provide novel data processing and analysis capabilities, while also providing personal health information to a for-profit industry that may store and sell data. In this research we describe the public's comfort with sharing health data with third-party commercial companies for patient and business purposes and how this comfort is associated with demographic factors (sex, age, race/ethnicity, education, employment, income, insurance status, and self-reported health status), perceived healthcare access, and concerns about privacy.

Willingness to Participate in Health Information Networks with Diverse Data Use: Evaluating Public Perspectives.

Introduction: Health information generated by health care encounters, research enterprises, and public health is increasingly interoperable and shareable across uses and users. This paper examines the US public's willingness to be a part of multi-user health information networks and identifies factors associated with that willingness.

Methods: Using a probability-based sample (n = 890), we examined the univariable and multivariable relationships between willingness to participate in health information networks and demographic factors, trust, altruism, beliefs about the public's ethical obligation to participate in research, privacy, medical deception, and policy and governance using linear regression modeling.