Treatment Decisions for a Future Self: Ethical Obligations to Guide Truly Informed Choices
Claire J. Creutzfeldt, Robert G. Holloway
JAMA, 2 January 2020; 323(2) pp 115-116
It is estimated that every 3 minutes in the United States, a person dies after sustaining a severe acute brain injury, such as an ischemic stroke, intracranial hemorrhage, traumatic brain injury, or cardiac arrest.1 Almost half of deaths after severe acute brain injury, 100 000 per year, occur during the acute hospitalization, and approximately 90% of patients die after a decision to limit the intensity of treatment rather than from the direct effects of the brain injury.1,2
The decision to continue or withdraw life-sustaining treatment usually involves asking a surrogate decision maker to balance the uncertain possibility that a patient will return to some minimally acceptable quality of life against the burden of a prolonged hospital and rehabilitation course, which are options that are difficult to predict and difficult to fathom…
Supporting informed decision-making about vaccination: an analysis of two official websites
Vivion, C. Hennequin, P. Verger, E. Dubé
Public Health, January 2020; 178 pp 112-119
To analyze the content of two official French-speaking websites that are used to inform the general public about recommended vaccines in France and Quebec.
Qualitative content analysis.
All pages that inform and educate parents regarding childhood vaccination were downloaded and analyzed according to evidence-informed risk communication metrics.
A total of 32 webpages, 14 videos, and two infographics were included in the analysis. The following were the most frequent risk communication approaches: ‘debunking common misconceptions about vaccination’ or ‘answering common questions about vaccines.’ Harm and benefit information focused primarily on the risks of vaccine-preventable diseases and the risks of adverse events after immunization. Most materials used qualitative terminology to describe the risk (e.g., vaccines are among the safest tools, adverse events are rare). Very few materials provided numeric likelihood of harms and benefits. When numeric information was stated, they were only presenting the risks of the diseases or number of cases in an outbreak. The approaches used to debunk misconceptions generally focused on the myth itself rather than the correct information. Few materials used visual aids (e.g., graphics, pictures, icons arrays, etc.) to convey important information.
It is often assumed that misinformation and rumors about vaccination found online is a leading cause of the increase in vaccine hesitancy. Existing communication materials could be improved to better align with best practices in risk communication. Given the availability of confusing and conflicting vaccine narratives, it is crucial that authoritative communication materials aim to build trust and support informed choices about vaccination.
Consent for newborn screening: screening professionals’ and parents’ views
Ulph, N. Dharni, R. Bennett, T. Lavender
Public Health, January 2020; 178 pp 151-158
Expansion of newborn bloodspot screening (NBS) within England, which practices an informed consent model, justified examining acceptability and effectiveness of alternative consent models.
Qualitative focus groups.
Forty-five parents and 37 screening professionals (SPs) participated. Data were analysed using thematic analysis.
Parents and SPs initially appeared to have differing views about appropriate consent models. Most parents accepted assumed consent, if adequately informed; however, once aware of bloodspot storage, informed consent was wanted. SPs valued informed consent, but acknowledged it was difficult to obtain. Both samples wanted parents to be informed but were unclear how this could be achieved. Most parents felt NBS was not presented as optional.
The simultaneous exploration of parents and SPs views, in real time is original. This rigour avoided the reliance on retrospective accounts which make it difficult to establish how decisions were made at the time. It is also unique in providing pre-interview consent models to drive the depth of data. It was rigorous in member checking. Findings suggested a preference for full disclosure of all information with some parents valuing this more than choice. Both samples queried whether current consent was sufficiently informed and voluntary. Results suggest differing tolerances of consent type if screening is solely for diagnostic purposes vs bloodspot storage. Results highlight the need for caution when examining consent model preferences without also checking knowledge, as opinions may be based on incomplete knowledge. Future research is needed to examine efficacy of proposed changes.
Procedural Informed Consent to Psychoanalysis: the Challenge from Transformative Experience
Journal of Ethics in Mental Health Open, 2019; 10 pp 1-11
Any valid informed consent to medical treatment needs the personal weighing of consequences of different treatment choices. In psychoanalysis, personal consequences are often unknown and, more importantly, cannot be reasonably weighed up before the start of analysis, as psychoanalysis constitutes a transformative experience in the sense of L.A. Paul (2014). The transformative potential hence complicates informed consent to psychoanalysis. In light of this, some authors have recommended to adopt a procedural approach to informed consent, where informed consent is repeatedly obtained throughout the process of psychoanalysis. However, this procedural informed consent, as I argue in this paper, does not constitute a valid form of informed consent due to the irreversibility of the psychoanalytic experience.
Researcher Views and Practices around Informing, Getting Consent, and Sharing Research Outputs with Social Media Users When Using Their Public Data
Nicholas Proferes, Shawn Walker
Proceedings of the 53rd Hawaii International Conference on System Sciences, 2020
Publicly accessible social media data is frequently used for scientific research. However, numerous questions remain regarding what ethical obligations researchers have in regard to using such content. We report on researchers’ own views and practices regarding informing, getting consent from, and sharing research outputs with users when using publicly accessible social media data. Findings reveal both diverging current practices and views on what researchers ought to do in the future. Some researchers view the ethics of public data use as merely requiring compliance with the requirements of their ethics board, while others’ ethical practices go beyond what is minimally required. Some researchers worry about the effects of contacting users to inform, seek consent, or share outputs with users. Yet others note that they want to build bridges with online communities through these mechanisms, but struggle with a lack of precedent and tools to do so at scale.
The role of authentic choices in medical consent [PhD Thesis]
University of Manitoba Electronic Thesis, 23 December 2019
This dissertation investigates whether the “authenticity” of a patient’s choice (i.e. its correspondence with important markers of the patient’s identity), should be part of a model of valid medical consent. This research question was addressed across three manuscripts using philosophical and empirical methods. Manuscript one is a philosophical manuscript defending my thesis that the standard model of valid consent may be improved by including the “authenticity” of a patient’s choice as an additive condition, thereby forming what I call the “authenticity-informed model of valid consent”. In this manuscript, I present seven procedural practices stemming from this new model. I argue that these practices should be considered for inclusion in the existing procedural recommendations of the Canadian Medical Protective Association (CMPA), which draw heavily from the standard model. The new practices could help physicians to i) more accurately evaluate the decisional capacity of patients; ii) more accurately evaluate the autonomy of patient choices, and iii) better support the psychological and physical well-being of patients. I also created vignettes to assess empirically whether the end goal of promoting authentic and autonomous patient choices would have instrumental value above choices that are solely autonomous. In manuscript two, I introduce the use of pretesting to evaluate and enhance the rigor of vignettes studies used in empirical ethics research. This manuscript includes an illustrative example of how data collected through a respondent debriefing procedure can be used to measure numerous desirable vignette characteristics. Manuscript three uses the vignettes to evaluate the instrumental value of shifting from a choice that is solely autonomous to one that is both authentic and autonomous in a single, but consequential, clinical scenario. This study confirms that shifting from a solely autonomous choice to an authentic and autonomous choice can substantially decrease anticipated decisional regret and increase both anticipated decisional satisfaction and compliance with postoperative instructions. In conclusion, there are plausible reasons to believe that adding authenticity may improve the standard model of valid consent and its associated procedural practices. Consequently, consideration should be given to modifying the procedural recommendations of the CMPA to reflect the addition of authenticity.
Rethinking Informed Consent in a Relational Perspective
notizie di POLITEIA, 2019; pp. 111-128 111
The article takes the interplay between autonomy and vulnerability into consideration, arguing that the informed consent procedures should be rethought in a relational perspective, so as to improve patients’ right to self-determination. The article aims to demonstrate that communicative contexts and power relations are as relevant as the quantity or the quality of information provided, as well as their form, modality, and effects. In order to discuss this topic, the recent Italian Act No. 219/2017 is analysed: more than other legal instruments, it explicitly asks to take the specific condition of every person into account, and to adapt the informative process to the needs of the patient. The precondition of a free and informed consent, besides the information received, is the relationship of trust between the parties involved, and the consistency between their modes of interaction and the necessity to keep a mutual trust. In that sense, the information is adequate and relevant as a function of the kind of relationship between the parties. The article argues that even if such a goal is largely outside the reach of the legislator, the legal system can settle the condition to make the relationship of trust possible.