Consent, Advance Directives, and Decision by Proxies [BOOK CHAPTER]
Annette Robertsen, Susanne Jöbges, Nicholas Sadovnikoff
Compelling Ethical Challenges in Critical Care and Emergency Medicine
Springer, 23 July 2020; pp 35-47
Abstract
The ethical principle of autonomy, the right of a patient to determine what therapies or interventions to accept or decline, has wide support in modern medical ethics and is strongly buttressed legally. Accordingly, clinicians need to have a robust familiarity with the statutes governing their practice, notably in such realms as advance directives and proxy decision-making. Ethical challenges frequently arise in the context of emergency and critical care medicine in which time-sensitive or highly consequential decisions must be made when the patient’s decision-making capacity is impaired or subject to question. This chapter addresses these challenges and offers potential approaches and solutions.

Distributed consent and its impact on privacy and observability in social networks
Juniper Lovato, Antoine Allard, Randall Harp, Laurent Hebert-Dufresne
Cornell University, Physics and Society, 29 June 2020
Open Access
Abstract
Personal data is not discrete in socially-networked digital environments. A single user who consents to allow access to their own profile can thereby expose the personal data of their network connections to non-consented access. The traditional (informed individual) consent model is therefore not appropriate in online social networks where informed consent may not be possible for all users affected by data processing and where information is shared and distributed across many nodes. Here, we introduce a model of “distributed consent” where individuals and groups can coordinate by giving consent conditional on that of their network connections. We model the impact of distributed consent on the observability of social networks and find that relatively low adoption of even the simplest formulation of distributed consent would allow macroscopic subsets of online networks to preserve their connectivity and privacy. Distributed consent is of course not a silver bullet, since it does not follow data as it flows in and out of the system, but it is one of the most straightforward non-traditional models to implement and it better accommodates the fuzzy, distributed nature of online data.