A survey on the attitudes of parents with young children on in-home monitoring technologies and study designs for infant research.

Remote in-home infant monitoring technologies hold great promise for increasing the scalability and safety of infant research (including in regard to the current Covid-19 pandemic), but remain rarely employed. These technologies hold a number of fundamental challenges and ethical concerns that need addressing to aid the success of this fast-growing field. In particular, the responsible development of such technologies requires caregiver input. We conducted a survey of the opinions of 410 caregivers on the viability, privacy and data access of remote in-home monitoring technologies and study designs. Infant-friendly wearable devices (such as sensing body suits) were viewed favourably. Caregivers were marginally more likely to accept video and audio recording in the home if data was anonymised (through automated processing) at point of collection, particularly when observations were lengthy. Caregivers were more open to international data sharing for anonymous data. Caregivers were interested in viewing all types of data, but were particularly keen to access video and audio recordings for censoring purposes (i.e., to delete data segments). Taken together, our results indicate generally positive attitudes to remote in-home monitoring technologies and studies for infant research but highlight specific considerations such as safety, privacy and family practicalities (e.g. multiple caregivers, visitors and varying schedules) that must be taken into account when developing future studies.

The Ethics of Emergent Health Technologies: Implications of the 21st Century Cures Act for Nursing.

The 21st Century Cures Act, passed in December 2016 by the United States Congress, is a public law aimed at accelerating the time it takes to get pharmaceutical drugs and medical devices into the market, in addition to shifting connected review processes from randomized controlled trials to real-world efficacy tests. As of December 2019, efforts are underway to introduce a "Cures Act 2.0" bill, with particular attention to the implementation of digital health within health systems. Research on the development of emergent health technologies is nascent; research examining health technology implications of 21st Century Cures Act for the health care workforce is nonexistent. This article fills a crucial gap in public awareness, discussing ethical implications of the 21st Century Cures Act and centering nursing. Nursing is a profession frequently acknowledged as practicing on "the front lines of care" and frequently responsible for the trialing of products in clinical settings. The article summarizes and evaluates key components of the 21st Century Cures Act related to health technology development. Discrete health technologies addressed are (a) breakthrough devices, (b) digital health software, and (c) combination products. It then connects these provisions to ethical considerations for nursing practice, research, and policy. The article concludes by discussing the relevance of emerging digital health technologies to the crafting of a "Cures 2.0" bill, with particular attention to this moment in light of digital care precedents set during the COVID-19 pandemic.