The notion of free will and its ethical relevance for decision-making capacity
Tobias Zürcher, Bernice Elger, Manuel Trachsel
BMC Medical Ethics, 8 May 2019; 20(31)
Abstract
Background
Obtaining informed consent from patients is a moral and legal duty and, thus, a key legitimation for medical treatment. The pivotal prerequisite for valid informed consent is decision-making capacity of the patient. Related to the question of whether and when consent should be morally and legally valid, there has been a long-lasting philosophical debate about freedom of will and the connection of freedom and responsibility.
Main text
The scholarly discussion on decision-making capacity and its clinical evaluation does not sufficiently take into account this fundamental debate. It is contended that the notion of free will must be reflected when evaluating decision-making capacity. Namely, it should be included as a part of the appreciation-criterion for decision-making capacity. The argumentation is mainly drawn on the compatibilism of Harry Frankfurt.
Conclusions
A solution is proposed which at the same time takes the notion of free will seriously and enriches the traditional understanding of decision-making capacity, strengthening its justificatory force while remaining clinically applicable.

Consent in pregnancy: a qualitative study of the views and experiences of women and their healthcare professionals
Jacqueline Nicholls, Anna L David, Joseph Iskaros, Anne Lanceley
European Journal of Obstetrics & Gynecology and Reproductive Biology, 11 May 2019
Abstract
Objective
Consent in antenatal settings is contentious, poorly understood and recognised as problematic for pregnant women. This study aimed to investigate participants’ views and experiences of the consent process.
Design
Qualitative research performed in a large urban teaching hospital in London. Sixteen pregnant women and fifteen healthcare professionals (obstetricians and midwives) participated. Consent consultations were observed and in-depth interviews carried out with healthcare professionals and pregnant women using semi-structured interview guides. Data were collectively analysed to identify themes in the experiences of the consent process.
Results
Four themes were identified: 1) Choice and shared decision-making. Pregnant women do not always experience consent in a choice-making way and often do not understand information provided to them. 2) Contextualising information disclosure. What is important to women is not only the information but the relational context in which consent is obtained. 3) Quality of HCP-woman relationship. Trust in their healthcare professional sometimes makes women seek less information and conversely. Individualised information is desired by women but professionals found it difficult to ensure that women receive this in practice. 4) Law and professional practice. Doctors are more aware of legal developments in consent related to the Montgomery case than their midwifery colleagues, but they are not always certain of the implications.
Conclusion
Results suggest that an effective antenatal consent process which empowers pregnant women requires their understanding of provided information to be elicited. There is a delicate balance to be struck between the trust of a patient in their professional and information-based consent, rather than a simple focus on improving information provision. Whilst recognising women’s desire for bespoke consent professionals acknowledged the difficulty of ensuring this in practice. If consent is to remain the legal yardstick of autonomous choice-making, women’s understanding and that shared with their healthcare professional needs to be more explicitly addressed.

Revamping the Privacy Policy: A Study on Informed Consent and User Interactions [PhD THESIS]
Denton Wood
Baylor University, Department of Computer Science, May 2019
Abstract
Privacy is an abstract concept that has very real repercussions for users of technology in the twenty-first century. Recent large-scale controversies such as the Facebook and Cambridge Analytica scandal bring into question users’ understandings of what companies are allowed to do with their data. The primary method of communicating privacy rights to users is the privacy policy; however, these policies are not always effective at gaining users’ informed consent regarding their rights. This thesis will attempt the show the effectiveness of privacy policies at gaining informed consent through an experiment showing the impact of different display factors on users’ understanding.

Informed Consent: A Monthly Review
___________________________

May 2019

This digest is intended to aggregate and distill key content around 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 GE2P2 Global Foundation’s Center for Informed Consent Integrity, which is solely responsible for its content. Comments and suggestions should be directed to:

Editor
Paige Fitzsimmons, MA
Associate Fellow
GE2P2 Global Foundation
paige.fitzsimmons@ge2p2global.org

Publisher
David R. Curry
President & CEO
GE2P2 Global Foundation
david.r.curry@ge2p2global.org

PDF Version: GE2P2 Global_Informed Consent – A Monthly Review_May 2019

Ethics of crisis sedation: questions of performance and consent
Nathan Emmerich, Bert Gordijn
Journal of Medical Ethics, 20 April 2019
Abstract
This paper focuses on the practice of injecting patients who are dying with a relatively high dose of sedatives in response to a catastrophic event that will shortly precipitate death, something that we term ‘crisis sedation.’ We first present a confabulated case that illustrates the kind of events we have in mind, before offering a more detailed account of the practice. We then comment on some of the ethical issues that crisis sedation might raise. We identify the primary value of crisis sedation as allowing healthcare professionals to provide some degree of reassurance to patients, their families and the professionals who are caring for them. Next we focus on the issue of informed consent. Finally, we ask whether continuous deep sedation might be preferable to crisis sedation in scenarios where potential catastrophic events can be anticipated.

Ethics and Breast Cancer
Amtul R. Carmichael, Kerstin Sandelin
Surgical Ethics, 27 March 2019; pp 257-264
Abstract
Enabling, empowering and educating a woman to make the right choice between breast-conserving surgery and mastectomy are aligned with the fundamental principle of bioethics, that is, respect for patient autonomy. A clear understanding of the contemporary ethical and social issues related to genetic testing for breast cancer is necessary to develop a practical approach for counselling, testing and treating patients with genetic disposition to breast cancer. Ethnic inequities, disparities, opportunity and timeliness to treatment and its prognostic significance on breast cancer mortality have been studied in several populations worldwide. While the underutilisation of screening mammography can be attributed to socioeconomic and cultural and geographic barriers, ethical principles must be taken into account. The debate regarding no intervention for low-grade ductal carcinoma in situ and the issue of overdiagnosis are further ethical issues that raise concerns in the informed decision process and the ethical concepts of no harm and autonomy.

Informed Consent: A Monthly Review
___________________________

April 2019

This digest is intended to aggregate and distill key content around 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 GE2P2 Global Foundation’s Center for Informed Consent Integrity, which is solely responsible for its content. Comments and suggestions should be directed to:

Editor
Paige Fitzsimmons, MA
Associate Fellow
GE2P2 Global Foundation
paige.fitzsimmons@ge2p2global.org

Publisher
David R. Curry
President & CEO
GE2P2 Global Foundation
david.r.curry@ge2p2global.org

PDF Version: GE2P2 Global_Informed Consent – A Monthly Review_April 2019

Analysis of Privacy Policies to Enhance Informed Consent (Extended Version)
Raúl Pardo, Daniel Le Métayer
Hyper Articles en Ligne, 15 Mar 2019
Abstract
In this report, we present an approach to enhance informed consent for the processing of personal data. The approach relies on a privacy policy language used to express, compare and analyze privacy policies. We describe a tool that automatically reports the privacy risks associated with a given privacy policy in order to enhance data subjects’ awareness and to allow them to make more informed choices. The risk analysis of privacy policies is illustrated with an IoT example.

Editor’s Note: “IoT” refers to the “internet of things” as explained in this article.

Performing informed consent in transgender medicine
Shuster SM
Social Science and Medicine, 3 March 2019; 226 pp 190-197
Abstract
Using in-depth interviews with 23 physical and mental healthcare providers and observations at transgender-specific healthcare conferences between 2012 and 2015, I examine how medical providers negotiate informed consent processes in their clinical encounters with trans patients. While a growing body of scholarship has examined informed consent in scientific research from the patient’s perspective, a gap remains in how informed consent is understood in clinical encounters, and from providers’ perspectives. I use the case of trans medicine, an emergent field of medicine that has not yet implemented standardized procedures or policies that shape providers’ decision-making. I demonstrate how many providers of trans medicine give voice to following informed consent, but fail to actually practice it in their work with trans patients. In performing informed consent, providers revert to a paternalistic model of care, which amplifies their medical authority while veiling power differentials in their clinical encounters and decision-making in trans medicine.

Predicting major mental illness: ethical and practical considerations
Stephen M. Lawrie, Sue Fletcher-Watson, Heather C. Whalley and Andrew M. McIntosh
British Journal of Psychiatry, 2019; 5(e30) pp 1–5
Summary
An increasing body of genetic and imaging research shows that it is becoming possible to forecast the onset of major psychiatric disorders such as depression and schizophrenia before people become ill with ever improving accuracy. Practical issues such as the optimal combination of clinical and biological variables are being addressed, but the application of predictive algorithms to individuals or in routine clinical settings have yet to be tested. The development of predictive methods in mental health comes with substantial ethical questions, including whether people wish to know their level of risk, as well as individual and societal attitudes to the potential adverse effects of data sharing, early diagnosis and treatment, which so far have been largely ignored. Preliminary data suggests that at least some people think predictive research is valuable and would take part in such studies, and some would welcome knowing the results. Future initiatives should systematically assess opinions and attitudes in conjunction with scientific and technical advances.