Scaffolding Informed Consent
Extended Essay
Dominic Wilkinson, Neil Levy
Journal of Medical Ethics, 20 December 2024
Abstract
    The principle of respecting patient autonomy underpins the concept and practice of informed consent. Yet current approaches to consent often ignore the ways in which the exercise of autonomy is deeply epistemically dependent.

In this paper, we draw on philosophical descriptions of autonomy ‘scaffolding’ and apply them to informed consent in medicine. We examine how this relates to other models of the doctor–patient relationship and other theories (eg, the notion of relational autonomy). A focus on scaffolding autonomy reframes the justification for existing ways of supporting decisions. In other cases, it suggests a need to rethink how, when and where professionals obtain consent. It may highlight the benefit of technology for supporting decisions.

Finally, we consider the implications for some high-stakes decisions where autonomy is thought to be critical, for example, termination of pregnancy. We argue that such decisions should not be free from all sources of influence—rather they should be protected from undesired influence.

Excerpt
…In what we might call a socially supported model of decision making, individuals make their decisions with input from others. They seek opinions and advice from family and friends, and information from medical professionals, and then attempt to weigh that information in coming to a decision that reflects their own values and outlook. Such socially supported decisions are very plausibly better for the input of others: a broader range of considerations are brought to bear than the individual could marshal on their own. But the final decision-making reflects cognition that is fully the individual’s own. Properly scaffolded models, however, go beyond socially supported models. On the latter, decision-making reflects cognition that is distributed across agents and across the environment. Scaffolded autonomy draws its inspiration from distributed models of cognition…

“Informed” consent? Ethical considerations for clinicians using therapy-matching platforms
Colette N. Delawalla, Lorenzo Lorenzo-Luaces
Journal of Consulting and Clinical Psychology, 2024; 92(12)
Abstract
Mental health care in the United States is prohibitively difficult to access. Barriers of entry include a shortage of providers, high cost of services, insufficient insurance coverage, and layers of bureaucracy. This problem of low supply and high demand created a unique environment for capitalist problem solvers to enter the therapeutic market, via “therapy-matching platforms.” Several ethically related Federal Trade Commission (FTC) complaints and independent investigations into these platforms highlight that the forward progress is not without growing pains. This commentary focuses on ensuring proper informed consent when providing services on therapy-matching platforms (e.g., BetterHelp, TalkSpace).

Informed Consent: A Monthly Review
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December 2024 :: Issue 72

In preparing this digest, we monitor a broad range of academic journals and utilize Google Scholar to search articles referencing  informed consent or assent. After careful consideration, a selection of these results appear in the digest. We also monitor other research, analysis, guidance and commentary beyond the academic literature globally, including calls for public consultation and symposia/conferences which address consent/assent in whole or in part. We recognize that some of the arguments presented in this edition may be controversial and may warrant closer scrutiny. We have elected to be generous in our inclusion with the goal of presentating of a wholistic landscape of informed consent literature as it is being published. 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: Center for Informed Consent Integrity – A Monthly Review_December 2024

Informed Consent: A Monthly Review
_________________

November 2024 :: Issue 71

In preparing this digest, we monitor a broad range of academic journals and utilize Google Scholar to search articles referencing  informed consent or assent. After careful consideration, a selection of these results appear in the digest. We also monitor other research, analysis, guidance and commentary beyond the academic literature globally, including calls for public consultation and symposia/conferences which address consent/assent in whole or in part. We recognize that some of the arguments presented in this edition may be controversial and may warrant closer scrutiny. We have elected to be generous in our inclusion with the goal of presentating of a wholistic landscape of informed consent literature as it is being published. 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: Center for Informed Consent Integrity – A Monthly Review_November 2024

A Turn Toward Caring Research: Iterative Consent, Reflexive Multilingual Methods, and Reciprocal Knowledge Production
Olivia Orosco
The Professional Geographer, 7 October 2024
Abstract
The discipline of geography continues to redress historically violent methods and move toward a more ethical and intentional research practice, one hopes. Derived from research with professional immigrant Latina caregivers during the first years of the COVID-19 pandemic (2021–2022), this article offers a reflective approach to the growing conversation of more intentional geographical methods. Learning from feminist and Indigenous methodologies as intertwining, this project takes reciprocity and accountability to and with the caregivers seriously. The research combines artistic portraiture and ethnographic methods to center caregivers as knowledge creators deserving of respect, attention, and artistic portrayal. Collaborative portraits, created by BIPOC artists, were part of the fifteen semistructured testimonio conversations and allowed the tangible centering of caregivers as people to be seen and heard. Learning from the caregivers themselves and through reflective work on methods, this article theorizes a process of iterative consent, multilingual methods, and reciprocal knowledge production and asks what a more ethical and accountable research partnership can and should look like.

Informed Consent: A Monthly Review
_________________

October 2024 :: Issue 70

In preparing this digest, we monitor a broad range of academic journals and utilize Google Scholar to search articles referencing  informed consent or assent. After careful consideration, a selection of these results appear in the digest. We also monitor other research, analysis, guidance and commentary beyond the academic literature globally, including calls for public consultation and symposia/conferences which address consent/assent in whole or in part. We recognize that some of the arguments presented in this edition may be controversial and may warrant closer scrutiny. We have elected to be generous in our inclusion with the goal of presentating of a wholistic landscape of informed consent literature as it is being published. 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: Center for Informed Consent Integrity – A Monthly Review_October 2024

A rapid review of the benefits and challenges of dynamic consent
Review Article
Winnie Lay, Loretta Gasparini, William Siero, Elizabeth K Hughes
Research Ethics, 9 September 2024
Open Access
Abstract
Dynamic consent is increasingly recommended for longitudinal and biobanking research; however, the value of investing in such systems is unclear. We undertook a rapid review of the benefits and challenges of implementing dynamic consent by searching five databases (Ovid Medline, Ovid Embase, Scopus, Web of Science, Cumulative Index to Nursing and Allied Health Literature – CINAHL) for articles published up to May 2023 that report on participants’ or researchers’ experience of dynamic consent. From 1611 papers screened, 12 met inclusion criteria. Guided by thematic analysis with an inductive approach, we synthesised 31 benefits and 8 challenges. Benefits included: enhanced participant experience through improved consent management and tailoring; greater participant engagement and retention through increased autonomy, trust and communication; reduced costs and burden and increased accessibility and inclusivity. Participants and researchers also valued additional features that dynamic consent platforms facilitate such as two-way communication and return of research updates. The main challenges included the digital divide and consent fatigue. The papers gave recommendations to mitigate these challenges, for example by supplementing with other communication tools and allowing a broad consent approach, respectively. Overall, dynamic consent was described as a valuable consent approach with many benefits and some surmountable challenges. Most included literature was qualitative, so further research is needed to quantify the impact of dynamic consent on recruitment, retention, and participant experience. Further long-term investigations are necessary to explore whether participants want to and do change their consent over time, as well as the impact of dynamic consent on participant privacy.

Quantifiable Bodies: The Influence of Biometric Technologies in Patient Consent
Morgan Banville, Elena Kalodner-Martin
Surveillance & Society, 7 September 2024
Abstract
While research has been done to identify the potential implications of biometric technology on marginalized populations’ privacy and autonomy, this paper contributes to existing research by examining these technologies in healthcare settings. Drawing from insights across surveillance studies, rhetoric of health and medicine, and technical communication, we identify how one leading healthcare institution in New York City has employed rhetorics of efficiency, effectiveness, safety, and security regarding its biometric technology system. This employment of biometric technologies often contributes to patients’ marginalization and dismissal. As we explore, interrogating the language used by the healthcare institution to describe biometrics opens opportunities for us—surveillance studies scholars, patients, allies, students, and more—to ensure that innovations within the healthcare system promote equity, agency, and improved outcomes for all.

Informed Consent: A Monthly Review
_________________

September 2024 :: Issue 69

In preparing this digest, we monitor a broad range of academic journals and utilize Google Scholar to search articles referencing  informed consent or assent. After careful consideration, a selection of these results appear in the digest. We also monitor other research, analysis, guidance and commentary beyond the academic literature globally, including calls for public consultation and symposia/conferences which address consent/assent in whole or in part. We recognize that some of the arguments presented in this edition may be controversial and may warrant closer scrutiny. We have elected to be generous in our inclusion with the goal of presentating of a wholistic landscape of informed consent literature as it is being published. 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: Center for Informed Consent Integrity – A Monthly Review_September 2024

Informed Consent: A Monthly Review
_________________

August 2024 :: Issue 68

In preparing this digest, we monitor a broad range of academic journals and utilize Google Scholar to search articles referencing  informed consent or assent. After careful consideration, a selection of these results appear in the digest. We also monitor other research, analysis, guidance and commentary beyond the academic literature globally, including calls for public consultation and symposia/conferences which address consent/assent in whole or in part. We recognize that some of the arguments presented in this edition may be controversial and may warrant closer scrutiny. We have elected to be generous in our inclusion with the goal of presentating of a wholistic landscape of informed consent literature as it is being published. 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: Center for Informed Consent Integrity – A Monthly Review_August 2024