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.

Informed Consent: A Monthly Review
___________________________

July 2020

This digest aggregates and distills key content around informed consent from a broad spectrum of peer-reviewed journals and grey literature, and from various practice domains and organization types including international agencies, INGOs, governments, academic and research institutions, consortiums and collaborations, foundations, and commercial organizations. We acknowledge that this scope yields an indicative and not an exhaustive digest product.

Informed Consent: A Monthly Review is a service of the Center for Informed Consent Integrity, a program of the GE2P2 Global Foundation. The Foundation is solely responsible for its content. Comments and suggestions should be directed to:

Editor
Paige Fitzsimmons, MA
Associate Director, Center for Informed Consent Integrity
GE2P2 Global Foundation
paige.fitzsimmons@ge2p2global.org
PDF Version: GE2P2 Global_Informed Consent – A Monthly Review_July 2020

‘Relative consent’ or ‘presumed consent’? Organ donation attitudes and behaviour
Joan Costa-I-Font , Caroline Rudisill, Maximilian Salcher-Konrad
European Journal of Health Economics, 26 June 2020
Abstract
Legislation, in the form of presumed consent, has been argued to boost organ donation but most evidence disregards the practice of seeking relative’s consent, which can either ‘veto’ donation decisions, or ‘legitimize them’, by removing any possible conflict with the donor’s family. We study the effect of presumed consent alongside family consent on indiviuals’ willingness to donate (WTD) one’s own and relatives’ organs, and on actual organ donation behaviours. Using data from 28 European countries for the period 2002-2010, we found that presumed consent (PC) policies are associated with increased willingness to donate organs, but this effect was attenuated once internal family discussions on organ donation were controlled for. Our findings indicate that relative’s consent acts as a veto of donation intentions and attenuates the effect of regulation on actual donations. More specifically, PC increases WTD one’s own and relatives’ organs in countries where no family consent is required. In contrast, family consent attenuates by 23% the influence of regulatory environment on actual donations. The effect is driven by the influence of family discussions which increased WTD, and in combination with presumed consent translated into higher organ donation rates.

Ethical and Legal Manifestations of Informed Consent
Peter Kalina
Technium Social Sciences Journal, 23 May 2020; 8
Open Access
Abstract
Informed consent to medical or surgical treatment, or “permission granted in the knowledge of the possible consequences” is an important, and sometimes contentious and controversial component of clinical practice.  From an ethical, legal and philosophical perspective; informed consent has significant implications for health care providers. The three principal elements of informed consent are 1) thorough presentation of information, 2) patient’s capacity to comprehend (competence), 3) patient’s voluntary willingness to undergo or refuse treatment.  The history of informed consent is highlighted by precedent-setting legal cases, the atrocities of World War II and subsequent 1947 Nuremberg Trials and, current HIPAA regulations and guidelines.  Informed consent involves shared decision-making between provider and patient.  Including patients acknowledges and safeguards patient autonomy such that health care decisions are made based on respecting individual preferences, goals, values, beliefs, objectives, and desires.  Providers act as advocates for patients’ rights.  These are fundamental premises of today’s patient-centered care.

Informed Consent: A Monthly Review
___________________________

June 2020

This digest aggregates and distills key content around informed consent from a broad spectrum of peer-reviewed journals and grey literature, and from various practice domains and organization types including international agencies, INGOs, governments, academic and research institutions, consortiums and collaborations, foundations, and commercial organizations. We acknowledge that this scope yields an indicative and not an exhaustive digest product.

Informed Consent: A Monthly Review is a service of the Center for Informed Consent Integrity, a program of the GE2P2 Global Foundation. The Foundation is solely responsible for its content. Comments and suggestions should be directed to:

Editor
Paige Fitzsimmons, MA
Associate Director, Center for Informed Consent Integrity
GE2P2 Global Foundation
paige.fitzsimmons@ge2p2global.org
PDF Version: GE2P2 Global_Informed Consent – A Monthly Review_June 2020

Partnering With Patients to Bridge Gaps in Consent for Acute Care Research
Neal W. Dickert, Amanda Michelle Bernard ,JoAnne M. Brabson, Rodney J. Hunter, Regina McLemore, Andrea R. Mitchell, Stephen Palmer, Barbara Reed, Michele Riedford, Raymond T. Simpson, Candace D. Speight, Tracie Steadman, Rebecca D. Pentz
The American Journal of Bioethics, 4 May 2020; 5 pp 7-14
Abstract
Clinical trials for acute conditions such as myocardial infarction and stroke pose challenges related to informed consent due to time limitations, stress, and severe illness. Consent processes should be sensitive to the context in which trials are conducted and to needs of patients and surrogate decision-makers. This manuscript describes a collaborative effort between ethicists, researchers, patients, and surrogates to develop patient-driven, patient-centered approaches to consent for clinical trials in acute myocardial infarction and stroke.

Our group identified important ways in which existing consent processes and forms for clinical trials fail to meet patients’ and surrogates’ needs in the acute context. We collaborated to create model forms and consent processes that are substantially shorter and, hopefully, better-matched to patients’ and surrogates’ needs and expectations from the perspective of content, structure, and tone. These changes, however, challenge some common conventions regarding consent.

What Does the Evolution From Informed Consent to Shared Decision Making Teach Us About Authority in Health Care?
History of Medicine
James F. Childress, Marcia Day Childress
AMA Journal of Ethics, May 2020
Open Access
Abstract
This article examines the legal doctrine and ethical norm of informed consent and its deficiencies, particularly its concentration on physician disclosure of information rather than on patient understanding, which led to the development of shared decision making as a way to enhance informed consent. As a vague and imprecise rubric, shared decision making encompasses several different approaches. Narrower approaches presuppose an individualistic account of autonomy, while broader approaches view autonomy as relational and hold that clinician-patient relationships grounded in good communication can assist decision making and foster autonomous choices. Shared decision making faces conceptual, normative, and practical challenges, but, with its goal of respecting, protecting, and promoting patients’ autonomous choices, it represents an important cultural change in medicine.

Informed Consent: A Monthly Review
___________________________

May 2020

This digest aggregates and distills key content around informed consent from a broad spectrum of peer-reviewed journals and grey literature, and from various practice domains and organization types including international agencies, INGOs, governments, academic and research institutions, consortiums and collaborations, foundations, and commercial organizations. We acknowledge that this scope yields an indicative and not an exhaustive digest product.

Informed Consent: A Monthly Review is a service of the Center for Informed Consent Integrity, a program of the GE2P2 Global Foundation. The Foundation is solely responsible for its content. Comments and suggestions should be directed to:

Editor
Paige Fitzsimmons, MA
Associate Director, Center for Informed Consent Integrity
GE2P2 Global Foundation
paige.fitzsimmons@ge2p2global.org
PDF Version: GE2P2 Global_Informed Consent – A Monthly Review_May 2020

Information Disclosure in Informed Consent
Review Article
Lydia Aiseah Ariffin
Malaysian Journal of Medicine and Health Sciences, May 2020
Open Access
Abstract
Informed consent has been recognised as an essential part of clinical practice, giving ethical and legal legitimacy to medical intervention. There is no universal standard on the amount and type of information that a patient is entitled to and needs to be adequately disclosed. This article proposes nine information that will assist the doctor in providing adequate information for a patient to evaluate whether to authorise medical intervention. The recommended information are: (i) diagnosis, prognosis and its uncertainties; (ii) nature of proposed medical intervention; (iii) the expected benefit of proposed medical intervention; (iv) the potential risk of proposed medical intervention; (v) alternative to proposed medical intervention; (vi) progress of proposed medical intervention; (vii) opportunity for a second medical opinion and to seek further details; (viii) costs of proposed and alternative medical intervention; and (ix) the person responsible for implementing medical intervention.