Informed Consent: A Monthly Review
_________________

February 2023 :: Issue 50

This digest aggregates and distills key content addressing 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_February 2023

Dignity and Respect: Why Therapeutic Assent Matters

Dignity and Respect: Why Therapeutic Assent Matters
Discussion and Review Paper
Jaime Flowers, Jillian Dawes
Behavior Analysis in Practice, 19 January 2023
Abstract
During therapeutic treatment and research in psychology and related fields, informed consent by the client or participant is required when they are over the age of 18; assent is required when a client or participant is under the age of 18 or a conserved adult. During both research and treatment, behavior analysts often work with neurodiverse individuals who have language deficits, and these clients may require unique assent procedures. This article will outline reasons behavior-analytic research and therapy require field-specific assent procedures. Furthermore, the goals of research and therapy are different and therefore assent may need to differ as well. This article will also argue that therapeutic assent during behavior-analytic treatment requires a unique set of guidelines and procedures that may differ from the behavior-analytic research.

Evaluation of consent to link Twitter data to survey data

Evaluation of consent to link Twitter data to survey data
Zeina Mneimneh
Journal of the Royal Statistical Society, December 2022; 185(S2) pp 364-386
Abstract
This study presents an initial framework describing factors that could affect respondents’ decisions to link their survey data with their public Twitter data. It also investigates two types of factors, those related to the individual and to the design of the consent request. Individual‐level factors include respondents’ attitudes towards helpful behaviours, privacy concerns and social media engagement patterns. The design factor focuses on the position of the consent request within the interview. These investigations were conducted using data that was collected from a web survey on a sample of Twitter users selected from an adult online probability panel in the United States. The sample was randomly divided into two groups, those who received the consent to link request at the beginning of the survey, and others who received the request towards the end of the survey. Privacy concerns, measures of social media engagement and consent request placement were all found to be related to consent to link. The findings have important implications for designing future studies that aim at linking social media data with survey data.

Metadiscourse in Informed Consent: Reflections for Improving Writing and Translation

Metadiscourse in Informed Consent: Reflections for Improving Writing and Translation
Isabel García-Izquierdo
GEMA Online Journal of Language Studies, November 2022, 22(4) pp 161-185
Abstract
Metadiscourse has been one of the most prolific areas of research in the field of applied linguistics in recent years. It is understood as the way we use language to connect with our audience, which is the result of integrating propositional content and interpersonal factors (Hyland, 2017). In this paper we will analyse Metadiscourse in one of the most complex medical-legal genres: informed consent (IC). Drawing on a small comparable bilingual corpus of texts belonging to this genre for surgery in Spanish and English, the paper aims to analyse (by using Sketch Engine tools) how metadiscursive elements are evident in written IC documents, and to reflect on what aspects need to be taken into account in order to improve the way these documents are written and translated in the future. The Key findings are a low frequency of Interactive resources and a more significant presence of Interactional resources in both corpora. However, boosters are almost non-existent, because a large part of the texts belonging to this genre incorporate pre-established formulaic text. Most of the content is related to the procedures requiring consent and their possible consequences, so the sender almost always tends to avoid universal statements and to display a certain reserve in case predictions are not fulfilled. The conclusion is threefold: some metadiscursive elements in the IC manifest themselves in a different way from other medical genres; a more frequent use of some of the interactive and interactional resources could lead to a better understanding; and finally, it would be important to include the analysis of these metadiscursive elements in the training of future medical writers and translators.

Informed Consent: A Monthly Review
_________________

January 2023 :: Issue 49

This digest aggregates and distills key content addressing 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_January 2023

The Inconsistencies of Consent

The Inconsistencies of Consent
Chunlin Leonhard
Catholic University Law Review, 2 December 2022; 71(4)
Open Access
Abstract
    U.S. legal scholars have devoted a lot of attention to the role that consent has played in laws and judicial consent jurisprudence. This essay contributes to the discussion on consent by examining judicial approaches to determining the existence of consent in three selected areas – contracts, tort claims involving medical treatment, and criminal cases involving admissibility of confessions, from the late nineteenth century until the present. This article examines how courts have approached the basic factual question of finding consent and how judicial approaches in those areas have evolved over time. The review shows that the late 19th century saw courts adopting a similar approach for finding consent across the three areas. Courts focused on observable signs of consent, verbal or nonverbal communications, to determine existence of consent. They found consent unless circumstances suggested that the consenting party lacked the power to use their will. However, courts began to diverge in the early and mid-twentieth century in their approaches to ascertaining consent. In contract disputes, courts’ consent approach has remained static, focusing on observable signs of consent or, in contract law parlance, “manifestations of assent.” In tort cases involving medical treatment, courts began requiring more than observable signs of consent; instead, courts focused on the consenting party’s access to information and comprehension, described by scholars as the informed consent doctrine. The judicial consent approach undertook the most dramatic change in criminal cases involving admissibility of confessions with judicial adoption of presumption of non-consent in custodial interrogation without the required warnings.

This article suggests that multiple factors appear to have contributed to divergent consent approaches across the three areas. Consent plays a different role in contract disputes from that in medical treatment and criminal confession cases. Courts have adopted a heightened consent inquiry in medical treatment and criminal confession cases as responses to significant social changes and increased public awareness of individual rights and the need to protect individuals from potential abuses and arbitrary government power. In addition, human cognitive biases—our flawed decision-making process, may have also contributed to the divergence.

Autonomy and Consent

Autonomy and Consent
Book Chapter
Neil C. Manson
The Routledge Handbook of Autonomy, 2022 [Routledge]
Abstract
In the philosophy of consent, the notion of autonomy is widely appealed to for a number of reasons. The philosophy of consent has tended to focus on certain types of consent, in certain domains where consent plays an important normative role. But consent is also a key part of everyday social interactions beyond the special domains of interest of the philosophy of consent. Because the relationship between autonomy and consent in the philosophy of consent has been discussed by others (Dworkin 1988; Beauchamp and Childress 2001; O’Neill 2002; Beauchamp 2010; Walker 2018), the aim here is to take a slightly different approach and to consider what kinds of autonomy might be relevant to a proper characterization of everyday consent. We will then briefly return to consider the significance of autonomy in the philosophy of consent.

Informed Consent: A Monthly Review
_________________

December 2022 :: Issue 48

This digest aggregates and distills key content addressing 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_December 2022

Explanation before Adoption: Revealing Methods Used to Support Informed Consent for Complex Platforms

Explanation before Adoption: Revealing Methods Used to Support Informed Consent for Complex Platforms
Rachel Eardley, Emma L. Tonkin, Ewan Soubutts, Amid Ayobi, Gregory J. L. Tourte, Rachael Gooberman-Hill, Ian J Craddock, Aisling Ann O’Kane
Proceedings of the ACM on Human-Computer Interaction [Bristol, UK], April 2023
Abstract
Explaining health technology platforms to non-technical members of the public is an important part of the process of informed consent. Complex technology platforms that deal with safety-critical areas are particularly challenging, often operating within private domains (eg health services within the home) and used by individuals with various understandings of hardware, software, and algorithmic design. Through two studies, the first an interview and the second an observational study, we questioned how experts (eg those who designed, built, and installed a technology platform) supported provision of informed consent by participants. We identify a wide range of tools, techniques, and adaptations used by experts to explain the complex SPHERE sensor-based home health platform, provide implications for the design of tools to aid explanations, suggest opportunities for interactive explanations, present the range of information needed, and indicate future research possibilities in communicating technology platforms.

Consent: A Research and Design Lens for Human-Computer Interaction

Consent: A Research and Design Lens for Human-Computer Interaction
Douglas Zytko, Jane Im, Jonathan Zong
Computer Supported Cooperative Work and Social Computing Conference Companion, 8 November 2022; pp 205–208
Open Access
Abstract
Consent has become an important concept across multiple areas within HCI/CSCW, community advocacy work, and the tech industry, for understanding social computing problems and designing safe and agentic computer-mediated communication. Recent research has studied consent in various topics, such as online-to-offline interaction and harm, data privacy and security, research ethics, and human-robot interaction. The goal of this panel is to bring together researchers and practitioners to discuss how consent has been defined and studied within HCI and adjacent fields, and how cross-field discourse around consent can inform future work that pursues safe and equitable computing. We aim to introduce consent as a multifaceted research and design lens to the HCI and CSCW community and illuminate ways that consent can contribute to better understanding or re-imagination of contemporary research interests. Lastly, the panel aims to spark cross-field communication around consent to identify latent connections across research topics and foster synergistic collaborations.

Editor’s note: In this abstract, HCI refers to human-computer interaction, and CSCW refers to Computer Supported Cooperative Work.