The Scope of Consent [BOOK]
Tom Dougherty
Oxford Scholarship Online, June 2021
Abstract
The scope of someone’s consent is the range of actions that they permit by giving consent. This book investigates the underexplored question of which normative principle governs the scope of consent. To answer this question, this investigation involves taking a stance on what constitutes consent. By appealing to the idea that someone can justify their behaviour by appealing to another person’s consent, this book defends the view that consent consists in behaviour that expresses a consent giver’s will for how a consent-receiver behaves. The ultimate conclusion of this book is that the scope of consent is determined by certain evidence that bears on the appropriate interpretation of the consent.
Creating a safe environment for text donation: towards a truly informed consent
Creating a safe environment for text donation: towards a truly informed consent
Katarzyna Skowrońska, Krzysztof Główka, Katarzyna Joanna Koprowska, Konrad Zieliński, Justyna Śnieżek, Anna Boros, Joanna Rączaszek-Leonardi
Proceedings of the Annual Meeting of the Cognitive Science Society, 2021
Abstract
Our social media activity data is a valuable source of information about our preferences, psychological and social processes. However, collecting such private data, including messages, for scientific research is at an early stage (Ueberwasser & Stark, 2017), which is natural given privacy issues involved (Bemmann & Buschek, 2020). Our study is geared towards: i) making the process of sharing personal data more ethical, consensual, informed and comfortable; ii) identifying profiles of participants willing to share these data. 293 students of both technical and non-technical background completed an online questionnaire designed to identify the relationship between willingness to share the data and factors such as: 1) kinds of data; 2) method of data processing; 3) purpose of data gathering and use; 4) demographics of participants. Qualitative and quantitative analyses revealed the categories of participants’ concerns and preferences regarding the form of anonymization conditional on the subjects’ profile and their technical skills.
Locke on consent [BOOK CHAPTER]
Locke on consent [BOOK CHAPTER]
Richard Vernon
The Lockean Mind [Routledge 2021]
Abstract
The idea of consent plays an important role in both Locke’s basic political theory and in his defence of toleration. In the former context the idea is notoriously plagued by the difficulties set by his distinction between’express’ and ‘tacit’ consent, which has given rise to several lines of interpretation, none of which is fully convincing. In the latter context, an idea of ‘hypothetical’ consent emerges more clearly, as Locke faces an issue that requires citizens to stand back from the controversies that divide them and to adopt a standpoint of reasonableness.
The case for using informed consent in journalism [BOOK CHAPTER]
The case for using informed consent in journalism [BOOK CHAPTER]
Bruce Gillespie
The Routledge Companion to Journalism Ethics [Routledge 2021]
Abstract
News stories have a much longer lifespan today than they used to, and the nature of search algorithms means that today’s unflattering story could become the top search result for an individual for years or even decades to come. Thus, now is the ideal moment to consider a new ethical contract between journalists and their ordinary human sources in the digital age, the foundation of which is informed consent. Such an arrangement would emphasize the importance of people who are not media-savvy experts understanding how the personal information they share with a reporter could be used, the possible consequences of becoming part of a published story, and how much, if any, input they would be able to offer throughout and after the publication process. This chapter reviews the existing rights of sources, including the European “right to be forgotten,” and examines how some journalists’ associations and news organizations have updated their codes of conduct and processes with respect to post-publication editing and “unpublishing.” It then reviews the literature about the value of giving ordinary sources more control over how their contributions are used and suggests a framework for how and when to implement informed consent in journalism.
Informed Consent: A Monthly Review
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July 2021
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_May 2021
Editor’s Note:
The latest webinar in the Center’s continuing series, Closing the loop on consent: from initial decision, continued participation, through to sharing of results, was held on June 16th 2021. Dr. Katie Gillies of the University of Aberdeen spoke about her work to strengthen the informed consent by developing an understanding of what information matters most to trial participants. She then spoke about how this understanding can lead to increased participant retention and further work to be done.
Implications and advice on getting COVID-19 vaccine consent
Implications and advice on getting COVID-19 vaccine consent
Feature
Jonathan Beebee
Learning Disability Practice, 1 April 2021; 24(2) pp 10-12
Abstract
How to support people with learning disabilities to get vaccinated. Vaccinations against COVID-19 are not mandatory and where people can give or refuse consent we have a responsibility to ensure consent is sought. Many people with learning disabilities will be unable to consent, but others will be able to consent if given the right support. Nurses, carers and families should begin planning as soon as possible, so they are prepared when the invitation to receive the vaccine arrives.
Randomized, Double-Blind Trial on the Impact of Word Count in Cancer Clinical Trial Consent Forms
Randomized, Double-Blind Trial on the Impact of Word Count in Cancer Clinical Trial Consent Forms
Original Contribution
Yahya Almodallal, Quyen Duong, Daniel Satele, Paul Novotny, Kathryn D. Cook , Cynthia Chauhan, Michelle K. Daiss, Jennifer Le-Rademacher, Sherry Looker, Nichole Martin, Michanda F. Smestad, Stacey J. Winham, Sumithra J. Mandrekar, Aminah Jatoi
JCO Oncology Practice, 14 June 2021
Abstract
Purpose
This randomized, double-blind study sought to understand whether cancer clinical trial consent form verbosity detracts from patients’ decision making on trial enrollment.
Methods
This trial tested mock consent forms of 2,000, 4,000, and 6,000 words. The first two comprised the two experimental arms and the third the control arm. Phase II was conducted to identify the promising arm, which, in phase III, was compared with the control arm. Each consent form described the same trial. Eligible adult patients reported a cancer history and English literacy. The primary end point used a patient-reported Likert scale to assess the relationship between information in the consent form and trial decision making.
Results
In phase II, 93 patients were accrued and prompted the selection of the 2,000-word consent form for phase III. In phase III, 182 patients were recruited, resulting in 240 total evaluable patients to compare the 2,000-word versus the 6,000-word arm (control). For the primary end point, 103 (84%) and 107 (91%) patients in the 2,000- and 6,000-word arms, respectively, strongly agreed or agreed with the following: “The information in this consent form helped me make a decision about whether or not to enroll in the trial” (two-sided, P = .14). Median time to read each consent form was 8 and 12 minutes, respectively (two-sided, P < .0001). Among those assigned these consent forms, 84% and 73%, respectively (two-sided, P = .04) signed or expressed a willingness to sign.
Conclusion
This study’s primary end point was not met. However, secondary outcomes suggest a need to further study the efficiency and efficacy of shorter consent forms for cancer clinical trial enrollment.
Implementing stakeholder engagement to explore alternative models of consent: An example from the PREP-IT trials
Implementing stakeholder engagement to explore alternative models of consent: An example from the PREP-IT trials
Guillermo Pechero Jr., Branden Pfaff, Mayank Rao, David Pogorzelski, Paula McKay, Ella Spicer, Andrea Howe, Haley K. Demyanovich, Debra L. Sietsema, Michael F. McTague, Lolita Ramsey, Martha Holden, Joshua Rudnicki, Jeff Wells, Michelle Medeiros, Gerard P. Slobogean, Sheila Sprague
Contemporary Clinical Trials Communications, 14 June 2021; 22
Abstract
Introduction
Cluster randomized crossover trials are often faced with a dilemma when selecting an optimal model of consent, as the traditional model of obtaining informed consent from participant’s before initiating any trial related activities may not be suitable. We describe our experience of engaging patient advisors to identify an optimal model of consent for the PREP-IT trials. This paper also examines surrogate measures of success for the selected model of consent.
Methods
The PREP-IT program consists of two multi-center cluster randomized crossover trials that engaged patient advisors to determine an optimal model of consent. Patient advisors and stakeholders met regularly and reached consensus on decisions related to the trial design including the model for consent. Patient advisors provided valuable insight on how key decisions on trial design and conduct would be received by participants and the impact these decisions will have.
Results
Patient advisors, together with stakeholders, reviewed the pros and cons and the requirements for the traditional model of consent, deferred consent, and waiver of consent. Collectively, they agreed upon a deferred consent model, in which patients may be approached for consent after their fracture surgery and prior to data collection. The consent rate in PREP-IT is 80.7%, and 0.67% of participants have withdrawn consent for participation.
Discussion
Involvement of patient advisors in the development of an optimal model of consent has been successful. Engagement of patient advisors is recommended for other large trials where the traditional model of consent may not be optimal.
‘To say no wasn’t something we could do’; Reflexive accounts and negotiations of the ethical practice of informed consent during the research process and beyond [BOOK CHAPTER]
‘To say no wasn’t something we could do’; Reflexive accounts and negotiations of the ethical practice of informed consent during the research process and beyond [BOOK CHAPTER]
Johanna Sixtensson
The Politics and Ethics of Representation in Qualitative Research, Routledge, 2021
Abstract
In this chapter, the implementation of the formal ethical principle of informed consent in the research process is discussed. By analyzing encounters and exchanges with a young research participant, both during the fieldwork and after publication, the text examines the meaning of the concept of consent and discloses complexities and ambivalences inherent in asking for and giving consent. It shows that giving consent or ‘saying no’ is a complicated practice that should not be reduced to a single act or signature on a consent form. Rather, consenting to participate in research is an open-ended, situated, ambivalent and not necessarily verbal process. It might also have an impact on participants beyond the actual research process: for instance, when faced with the researcher’s representations of personal interview accounts in research reports. The text captures the relationality that exists between researchers and those we research, especially regarding how dependent researchers are on participants’ consent, their acts and the quality of the empirical material that participants ‘generate’.
Managing Consent for Data Access in Shared Databases
Managing Consent for Data Access in Shared Databases
Osnat Drien, Antoine Amarilli, Yael Amsterdamer
IEEE Xplore, 22 June 2021
Abstract
Data sharing is commonplace on the cloud, in social networks and other platforms. When a peer shares data and the platform owners (or other peers) wish to use it, they need the consent of the data contributor (as per regulations such as GDPR). The standard solution is to require this consent in advance, when the data is provided to the system. However, platforms cannot always know ahead of time how they will use the data, so they often require coarse-grained and excessively broad consent. The problem is exacerbated because the data is transformed and queried internally in the platform, which makes it harder to identify whose consent is needed to use or share the query results. Motivated by this, we propose a novel framework for actively procuring consent in shared databases, focusing on the relational model and SPJU queries. The solution includes a consent model that is reminiscent of existing Access Control models, with the important distinction that the basic building blocks – consent for individual input tuples – are unknown. This yields the following problem: how to probe peers to ask for their consent regarding input tuples, in a way that determines whether there is sufficient consent to share the query output, while making as few probes as possible in expectation. We formalize the problem and analyze it for different query classes, both theoretically and experimentally.
Center for Informed Consent Integrity 