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In the wake of the 2019 COVID-19 pandemic, at-home digital care has expanded. This change has set off a cascade of effects, including new pathways for information flows that include a wider array of direct-to-consumer companies and products. This new landscape requires a reexamination of the implicit and explicit social contract between patients, clinicians, and the health delivery system: Who has access to personal health information? What is the appropriate role of commercial companies? Are people who continue to receive most of their care in clinical settings subject to the new norms of at-home care? This technology and circumstance drive change in health is not a new phenomenon. In this chapter, we examine the emergence of the Michigan BioTrust for Health in 2009 as an instance of renegotiating the social contract between stakeholders in response to cultural and technological changes that made information more available and accessible to a broader community of users. In the case of the BioTrust, Michigan’s four million “legacy” newborn screening bloodspots and the related health information were repurposed to be more widely available, not only for public health, but also for research. Based on prior research on the ethical and policy implications for patients that were part of the legacy system (i.e. those being asked to make the change from old to new systems of care), we review key findings on attitudes about informed consent and notification, partnerships with commercial companies, and trust. We review consumer preferences and expectations in the context of the BioTrust for Health and the expanded use of newborn screening bloodspots and consider their implications for the governance of at-home digital health care.
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