Foundations of Preemptive Compassion: A Behavioral Concept Analysis of Compulsion, Consent, and Assent
Anna M. Linnehan, Awab Abdel-Jalil, Sheila Klick, Jonathan Amey, Richele Yeich, Kyle Hetzel
Behavior Analysis in Practice, 15 December 2023
Abstract
The recent changes to the Behavior Analysis Certification Board Ethics Code for Behavior Analysts along with the calls to action for compassionate care have highlighted the need for a reevaluation of behavior research and clinical programs. We propose a behavior analytic definition of compassion where the relieving or prevention of distress is the reinforcer for the professional. One way of minimizing distress may be to require that assent be provided by a participant in an intervention. The definition of assent typically includes reference to willingness to participate in an intervention or activity. We provide a framework that goes beyond simple willingness to participate and distinguishes between apparent/implicit coercion and genuine assent by considering the alternatives described as degrees of freedom available to the participant. We distinguish between compulsion/explicit coercion, consent, and assent. Additionally, we will differentiate genuine consent and assent from apparent consent and assent in the design of compassionate behavioral programs.

Editor’s Note: [Excerpts from Ethics Code]
2.11 Obtaining Informed Consent
Behavior analysts are responsible for knowing about and complying with all conditions under which they are required to obtain informed consent from clients, stakeholders, and research participants (e.g., before initial implementation of assessments or behavior-change interventions, when making substantial changes to interventions, when exchanging or releasing confidential information or records). They are responsible for explaining, obtaining, reobtaining, and documenting required informed consent. They are responsible for obtaining assent from clients when applicable
6.04 Informed Consent in Research (see 1.04, 2.08, 2.11)
Behavior analysts are responsible for obtaining informed consent (and assent when relevant) from potential research participants under the conditions required by the research review committee. When behavior analysts become aware that data obtained from past or current clients, stakeholders, supervisees, and/or trainees during typical service delivery might be disseminated to the scientific community, they obtain informed consent for use of the data before dissemination, specify that services will not be impacted by providing or withholding consent, and make available the right to withdraw consent at any time without penalty.

Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review
Research
Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Hyun Ho Kim, Sooyoung Yoo, Jeong-Hyun Kim, Eun Kyung Choi, Ho Young Lee
BMC Medical Ethics, 1 December 2023; 24(107)
Open Access
Abstract
Background
Conventional consent practices face ethical challenges in continuously evolving digital health environments due to their static, one-time nature. Dynamic consent offers a promising solution, providing adaptability and flexibility to address these ethical concerns. However, due to the immaturity of the concept and accompanying technology, dynamic consent has not yet been widely used in practice. This study aims to identify the facilitators of and barriers to adopting dynamic consent in real-world scenarios.
Methods
This scoping review, conducted in December 2022, adhered to the PRISMA Extension for Scoping Reviews guidelines, focusing on dynamic consent within the health domain. A comprehensive search across Web of Science, PubMed, and Scopus yielded 22 selected articles based on predefined inclusion and exclusion criteria.
Results
The facilitators for the adoption of dynamic consent in digital health ecosystems were the provision of multiple consent modalities, personalized alternatives, continuous communication, and the dissemination of up-to-date information. Nevertheless, several barriers, such as consent fatigue, the digital divide, complexities in system implementation, and privacy and security concerns, needed to be addressed. This study also investigated current technological advancements and suggested considerations for further research aimed at resolving the remaining challenges surrounding dynamic consent.
Conclusions
Dynamic consent emerges as an ethically advantageous method for digital health ecosystems, driven by its adaptability and support for continuous, two-way communication between data subjects and consumers. Ethical implementation in real-world settings requires the development of a robust technical framework capable of accommodating the diverse needs of stakeholders, thereby ensuring ethical integrity and data privacy in the evolving digital health landscape.

Study of Informed Consent Rules in Face Recognition
Linxi Yang
Journal of Humanities, Arts and Social Science, 27 November 2023
Abstract
The advent of the era of big data is an irreversible trend. With the development of network technology, personal information has become closely integrated with various social fields, encompassing technologies for information capture, transmission, and storage. Daily applications, access to places, and face recognition technology play an indispensable role in various aspects. However, while enjoying the convenience brought by information technology, the protection of personal information also faces inevitable challenges. Informed consent rules are studied to address the issues that arise in the information society, such as the lack of sufficient information for individuals, unreasonable consent practices, and unclear handling of personal information dynamics. In order to address these shortcomings, the notification method in informed consent rules needs to be improved to effectively protect personal information. This will allow for better protection of personal information security while still utilizing the convenience provided by facial recognition technology in a reasonable manner.

Informed Consent: A Monthly Review
_________________

December 2023 :: Issue 60

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: Center for Informed Consent Integrity – A Monthly Review_December 2023 Continue reading →

Public health measures and the rise of incidental surveillance: Considerations about private informational power and accountability
Original Paper
A. Kamphorst, A. Henschke
Ethics and Information Technology, 16 November 2023
Open Access
Abstract
The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities.

Consent as Mechanism to Preserve Information Privacy: Its Origin, Evolution, and Current Relevance
Conference paper
Marietjie Botes
International Workshop on Security and Trust Management, STM 2023, 30 October 2023
Abstract
Informed consent and the requirements to obtain ethical-legal sound consent has a long and rich history that originated with the medical treatment of patients and then evolved into its application in the field of biomedical research. The same concepts and principles of consent has been adopted to be applied in the digital sphere. However, upon closer scrutiny it is clear why this principle, that originated for the protection of a person’s bodily integrity cannot be adequately applied in the digital sphere to protect people’s personal data. To the contrary it transpired that the ethical-legal requirements of consent has been made futile in the context of digital consent receipts by erroneously comparing and applying this concept to transactions receipts and commercial contracts. This paper investigates this evolution of biomedical consent to digital consent and analyze the difference between the concept of consent as it developed for biomedical application and compare that with the current application of consent in the digital sphere.

Consent: Legacies, Representations, and Frameworks for the Future
Book
Sophie Franklin, Hannah Piercy, Arya Thampuran, Rebecca White
Routledge, 2023
Abstract
    Consent: Legacies, Representations, and Frameworks for the Future examines the conceptualisation of ‘consent’ across various historical periods, cultures, and disciplines to offer an expansive, pluralistic vision for future articulations of consent as it circulates throughout contemporary life in sexual encounters, medical contexts, and media representations.
This volume is distinctive in its diverse conceptual scope and commitment to cross-disciplinary dialogue, accommodating perspectives on consent that are contextually sensitive and culturally diverse. The chapters examine a range of topics, from socio-cultural engagements with consent in Latin American music, feminist movements in Pakistan, and BDSM in Poland, to theoretical and pedagogical ones exploring alternative possibilities for framing and understanding consent through intersectional approaches and institutional curricula.
Consent: Legacies, Representations, and Frameworks for the Future is of value to researchers, practitioners, undergraduate and postgraduate students, and general readers interested in histories, representations, and future possibilities of consent in its many manifestations.

Informed Consent: A Monthly Review
_________________

November 2023 :: Issue 59

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: Center for Informed Consent Integrity – A Monthly Review_November 2023 Continue reading →

We will selectively include calls for public consultation from multilateral agencies, governments, INGOs and other sources where there is a clear intersection with consent/assent. This might be obvious from the title of the draft guidance, regulations, etc., but more often, it will be a thematic area or topic – if properly addressed at all. If you would like to explore participation with our working group developing submissions for these calls, please contact us [david.r.curry@ge2p2global.org].

 Call for input on the right to access and take part in scientific progress
Issued by Special Rapporteur in the field of cultural rights, UNHCHR
Deadline: 13 November 2023
Purpose: To inform the upcoming report of the Special Rapporteur to the Human Rights Council to be presented in March 2024
Key questions and types of input/comments sought via the questionnaire (Word):
English | Français | Español
[Excerpt]
…Participation in science

9. How is the right of every person to participate in scientific progress and in decisions concerning its direction understood and implemented? What are the challenges? How are lack of representativeness of marginalized groups and inequalities in participation addressed?
10. How is ‘citizen science’ (ordinary people doing science) understood in your country? Is it considered important, and what measures have been put in place to support it, particularly in terms of access to information and data, and participation in decision-making? What are the challenges? Please provide an example.
11. To what extent are indigenous sciences and alternative sciences acknowledged, supported and included in policy decision-making? How is the conversation ensured between science and other kinds of knowledge?What are the limits to the right of every person to take part in scientific progress and in decisions concerning its direction and for which purposes? Please provide examples if any.

  

Request for Information (RFI): Inviting Comments and Suggestions on Opportunities and Challenges for the Collection, Use, and Sharing of Real-World Data (RWD) Including Electronic Health Records, for National Institutes of Health (NIH) Supported Biomedical and Behavioral Research
U.S. National Institutes of Health on 09/28/2023. 
Responses must be received by December 14, 2023
Background
   Researchers are increasingly using data collected in real-world settings to augment traditional research studies, as well as develop more effective treatments and interventions for patients. These “real-world data (RWD)”, defined by the U.S. Food and Drug Administration, are data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources. Examples of RWD include data derived from electronic health records, medical claims data, data from product or disease registries, and data gathered from other sources (such as digital health technologies) that can inform on health status. While these data hold tremendous promise for biomedical and behavioral research, they can be collected from a variety of sources through multiple mechanisms, creating challenges for researchers and questions for those whose data are being shared.
   Importantly, NIH is committed to ensuring participant privacy and autonomy are protected in all NIH-supported research. As NIH establishes health-related research data platforms that include access to RWD, NIH continues to prioritize maximizing data access while upholding participant preferences regarding the collection and use of their data…
Information Requested
NIH is requesting public comment on the use of RWD for NIH-supported biomedical and behavioral research, including opportunities for leveraging the benefits of RWD and strategies for its responsible use. NIH also seeks to better understand community perspectives on the potential value and constraints—including scientific, administrative, legal, business, and bioethical—for the increased use of RWD in biomedical and behavioral research.

Green bioethics, patient autonomy, and informed consent in health care
Original Research
David B Resnik, Jonathan Pugh
Journal of Medical Ethics, 13 October 2023
Abstract
Green bioethics is an area of research and scholarship that examines the impact of health care practices and policies on the environment and emphasizes environmental values, such as ecological sustainability and stewardship. Some green bioethicists have argued that health care providers should inform patients about the environmental impacts of treatments and advocate for options that minimize adverse impacts. While disclosure of information pertaining to the environmental impacts of treatments could facilitate autonomous decision-making and strengthen the patient-provider relationship in situations where patients have clearly expressed environmental concerns, it may have the opposite effect in other situations if it serves to make patients feel like they are being judged or manipulated. We argue, therefore, that there is not a generalizable duty to disclose environmental impact information to all patients during the consent process. Providers who practice green bioethics should focus on advocating for system-level changes in health care financing, organization, and delivery and use discretion when bringing up environmental concerns in their encounters with patients.