Lack of Informed Consent Form Reading in Online Studies
Case Study
Michael M. Knepp
SAGE Research Methods: Doing Research Online, 2022
Abstract
This case study will discuss the design and, unlike most methods cases, findings of an experiment in order to highlight issues around collecting informed consent and help the reader decide how to best obtain informed consent for their project. My interest in this field of research began when a colleague of mine conducted a study where multiple subjects withdrew during the second hour of his study when requested to do an awkward stress task. That situation inspired a study exploring the rates at which subjects read informed consent forms before signing them. This investigation emphasized how one could improve a severe lack of reading consent forms in an online setting where there is no additional researcher oversight. Four hundred fifty-eight students participated in a study advertised as an adult temperament study. The study actually examined whether answering five questions about the informed consent form improved the likelihood of noticing a manipulation placed in the form’s method section in the laboratory and online settings. The additional questions did improve reading the full form in both laboratory and online settings; yet, overall reading rates were still low. The study concluded that there are serious online research consent issues given subject reading rates in the online setting as only 13% of students in the online-no questions read enough of the form to notice the manipulation.

Ethics and consent in more-than-human research: Some considerations from/with/as Gumbaynggirr Country, Australia
Aunty Shaa Smith, Uncle Bud Marshall, Neeyan Smith, Sarah Wright, Lara Daley, Paul Hodge
Transactions of the Institute of British Geographers, 21 November 2021
Open Access
Abstract
A considerable body of recent work within the social sciences has attempted to engage more deeply with place, place-based knowledge, and more-than-human agency. Yet what this might look like in relation to ethical research practice, especially in the case of research proceeding on unceded Indigenous lands, is unclear. Taking more-than-human agency seriously means ethical research practice must be extended beyond a human-centric approach. As a Gumbaynggirr and non Gumbaynggirr research collective researching on, with, and as Gumbaynggirr Country in so-called Australia, we offer a contribution to discussions of research ethics and protocols that centres the consent of Country: the lands, waters, and skies of Aboriginal and Torres Strait Islander homelands, and the human and more-than-human beings that co-become there. In this paper, we share some of our learnings and discuss how we have tried not just to listen to Country but also to honour its agencies, knowledges, and sovereignties. As part of this honouring, we prioritise in particular the deeply placed Gumbaynggirr knowledges of Aunty Shaa Smith and Uncle Bud Marshall to explore what being guided by Gumbaynggirr Law/Lore and sovereignty means in practice and the challenges and possibilities of gaining consent of Country in ways underpinned by Indigenous Law/Lore. We propose a more expansive understanding of consent that includes attention to more- than- human sovereignties and draw on our collective’s learning to reframe the need for limits on research as openings rather than closures. In sharing our Gumbaynggirr-led and Country-led perspectives, we aim to deepen decolonising research praxis within human geography and the social sciences more broadly.

Editor’s note: We note that the article references the knowledges of Aunty Shaa Smith and Uncle Bud Marshall while also being lead authors on the paper.

Informed Consent: A Monthly Review
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March 2022

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_March 2022

Consent [BOOK CHAPTER]
Kate McCombe
Quick Hits in Obstetric Anesthesia, 1 January 2022; pp 93-96 [Springer]
Abstract
Adult patients with capacity have absolute autonomy over their bodies and so we must seek valid consent before any medical intervention. Failing to gain consent risks criminal prosecution for battery (harmful or offensive contact with another person), a civil claim in medical negligence for financial compensation, and disciplinary action from the professional regulators e.g. the General Medical Council (GMC) in the UK.

Informed Consent: A Monthly Review
___________________________

February 2022

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 2022

Automating Cookie Consent and GDPR Violation Detection [CONFERENCE PAPER]
Dino Bollinger, Karelcc Kubicek, Carlos Cotrini, Davidcc Basin
USENIX Security Symposium 2022, Boston, MA, USA; 10–12 August 2022
Abstract
The European Union’s General Data Protection Regulation (GDPR) requires websites to inform users about personal data collection and request consent for cookies. Yet the majority of websites do not give users any choices, and others attempt to deceive them into accepting all cookies. We document the severity of this situation through an analysis of potential GDPR violations in cookie banners in almost 30k websites. We identify six novel violation types, such as incorrect category assignments and misleading expiration times, and we find at least one potential violation in a surprising 94.7% of the analyzed websites. We address this issue by giving users the power to protect their privacy. We develop a browser extension, called CookieBlock, that uses machine learning to enforce GDPR cookie consent at the client. It automatically categorizes cookies by usage purpose using only the information provided in the cookie itself. At a mean validation accuracy of 84.4%, our model attains a prediction quality competitive with expert knowledge in the field. Additionally, our approach differs from prior work by not relying on the cooperation of websites themselves. We empirically evaluate CookieBlock on a set of 100 randomly sampled websites, on which it filters roughly 90% of the privacy-invasive cookies without significantly impairing website functionality.

Privacy and Informational Self-determination through Informed Consent: the Way Forward [CONFERENCE PAPER]
Mohamad Gharib
International Workshop on SECurity and Privacy Requirements Engineering (SECPRE), 4 January 2022
Open Access
Abstract
“I have read and agree to the Privacy Policy”. This can be described as one of the biggest lies in the current times, and that is all what a service provider needs to acquire what can be called “informed consent”, which allows it to do as it pleases with your Personal Information (PI). Although many developed countries have enacted privacy laws and regulations to govern the collection and use of PI as a response to the increased misuse of PI, these laws and regulations rely heavily on the concept of informational self-determination through the “notice” and “consent/choice” model, which as we will see is deeply flawed. Accordingly, the full potential of these privacy laws and regulations cannot be achieved without tackling these flaws and empowering individuals to take an active role in the protection of their PI. In this paper, we argue that to advance informational self-determination, a new direction should be considered. In particular, we propose a model for informed consent and we introduce a proposed architecture that aims at tackling existing limitations in current approaches.

Informed Consent: A Monthly Review
___________________________

January 2022

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 2022

Interactive Media-Based Community Consultation for Exception From Informed Consent Trials
Jan O. Jansen, Shannon W. Stephens, Brandon Crowley, Kenji Inaba, Sara F. Goldkind, John B. Holcomb
The Journal of Trauma and Acute Care Surgery, 29 November 2021
Abstract
Community consultation (CC) is a requirement for exception from informed consent (EFIC) research. This article explores the issue of how representative such consultations can and should be, with particular reference to the use of media-based activities. Interactive, media-based CC strategies are gaining traction, because they have much greater reach than traditional methods, but the increasing use of such methods has also led to calls to ensure that those contacted are representative of the community at risk. However, this is more complex than at first apparent. This article examines the question of how the “trauma community” should be defined, and what characteristics might be used to assess whether a sample of this community is representative. It also considers what data are actually available in order to satisfy such requirements.

The Problem of Consent in Feminist Practical Ethics
Laura Avakyan, Galina Tsimmerman, Alexander Zimmermann, Vladimir Shcherbakov
Wisdom, 2021; 4(20)
Open Access
Abstract
The article analyzes the topical problem of consent in modern feminist theory as a way of achieving public consensus on the goals and forms of women’s emancipation. The emancipation of women is one of the most important achievements of modern society and an ongoing process. Therefore, the issues that are being discussed within the framework of feminist ethics are appropriate. For example, the extent to which men who hold power and dominance for thousands of years can genuinely liberate women and share with them equal rights and opportunities. There is also an acute problem of the extent to which women themselves are willing to show solidarity and their consent on social and political issues. These issues and discussions by contemporary feminists, who deserve the attention of a wide range of experts in applied ethics, argumentation theory, social and political theory, are addressed in this study.