Advances in biomarker science are transforming the treatment of Alzheimer’s disease. First, clinicians can now identify Alzheimer’s disease neuropathology in situ, years, or even decades, before the onset of cognitive and functional impairment using biomarkers, particularly measures of amyloid, tau, and neurodegeneration. Second, there is growing evidence that other digital markers – for instance, changes in banking and driving patterns – can be used to identify older adults at increased risk of cognitive decline. As a result of these two advances, there is growing interest in monitoring older adults for incipient changes in cognition that might affect their wellbeing. This monitoring can be no-tech, such as when an older adult asks a friend or family member to let them know if they start repeating questions or retelling stories. Or it can be high-tech, such as installing a device in one’s car that tracks sudden accelerations and decelerations and the distance traveled from home. While there is great enthusiasm for this kind of monitoring among clinicians and researchers, and even, as our own research shows, among some older adults and their family members, other older adults deem monitoring to be an unwanted intrusion on their privacy. This chapter discusses the changing understanding of Alzheimer’s disease risk; presents data on the desire for monitoring, highlighting the potential for intrafamilial conflict; considers the ethical obligations of non-health businesses to collect or disclose information about Alzheimer’s disease risk; and, finally, identifies potential ethical and legal challenges – such as privacy, stigma, and discrimination – with possible solutions.

In the United States, institutional review boards (IRBs) occupy a crucial independent oversight role and are, therefore, a familiar part of the Alzheimer’s disease (AD) research landscape. IRBs serve as gatekeepers, providing ethical and regulatory oversight of research to ensure the adequacy of human subject protections. In this chapter, we provide an overview of IRBs, consider how to manage conflicts of interest, and highlight select ethical issues that arise in AD research.

There is a deep tension at the heart of modern genomics between the idea that science has now proven that there is only one race, the human race versus an enduring concern with genetic variation that might correlate with racial and ethnic categories. This tension shapes how we conceptualize the nature of race, approach problems of health disparities, and formulate related regulatory directives. Recently, this tension has become manifest in the shift from “personalized” to “precision” medicine and the inauguration of the massive “All of Us” initiative from the NIH aiming to enroll one million people into a genomic data base. This chapter will explore this shift and consider the broader ethical, legal, and social implications of reintroducing race (now as a “subpopulation”) at the forefront of biomedical advancement. In the move from “personal” to “precision” medicine, race is being hard-wired into massive data bases as a basic category for structuring biomedical research and practice. Such practices run the risk of reinvigorating dangerous and inaccurate conceptions of race as biological in a manner that could both undermine attempts to address persistent race-based health disparities and fuel pernicious racist ideologies.

Asymmetry between the supply of and demand for transplantable organs necessitates rationing and should ideally serve as a spur to ethical reflection and policy innovation. Transplantation policies can be animated by various principles, such as maximizing total benefits and fairness. Implicitly, these principles demand that we interrogate our beliefs about the meaning of and appropriate role for disability in the face of scarce resources. How we conceive of disabilities – whether as a “mere difference” or a “bad difference” – influences our thinking about both donation and allocation of organs and should, therefore, be made explicit.