This paper looks at the ethics of opt-in vs. opt-out of organ donation as Scotland has transitioned its systems to promote greater organ availability. We first analyse studies that compare the donation rates in other regions due to such a system switch and find that organ increase is inconclusive and modest at best. This is due to a lack of explicit opt-out choices resulting in greater resistance and family override unless there are infrastructures and greater awareness to support such change. (...) The paper then looks at the difference between informed consent of the opt-in vs. presumed consent in the opt-out approaches. Patient autonomy and dignity are better reflected with informed consent. Eighteen months have passed since the new organ donation policy has come into effect, this paper recommends more research into organ donors’ psychological motivations to help governments and the healthcare profession obtain more organs for transplantation. (shrink)

Dickert et al. (2020) effectively address how factors such as time limitations, stress, and illness severity in acute conditions warrant a deeper evaluation of how current consent processes serve patients. While data suggests that patients “prefer to be asked for permission upfront rather than waiving consent” (2), consent forms themselves “are frequently long and technical, follow rigid templates, and contain language that appears to prioritize institutional protection” (1). Such findings elucidate patients’ valuation of personal agency over settling for the “benefit (...) of the doubt” that physicians and the consent forms they provide are acting in the patients’ best interests. In response, the authors recommend revisions to consent forms in terms of content, structure, and tone to better facilitate patient understanding beyond the mere conveyance of information. We aim to build Dickert et al.’s discussion of how “consent processes serve functions beyond facilitating an informed, autonomous decision” (2), but with a broader focus on an underrecognized purpose of the consent process: namely, reaffirming a patient’s status as a capable, rational agent. Specifically, we argue that patients can exercise this agency when they thoroughly understand the consent process, per Grimm’s (2012) conception of understanding. (shrink)

Classic statements of research ethics advise against permitting physician-investigators to obtain consent for research participation from patients with whom they have preexisting treatment relationships. Reluctance about “dual-role” consent reflects the view that distinct normative commitments govern physician–patient and investigator–participant relationships, and that blurring the research–care boundary could lead to ethical transgressions. However, several features of contemporary research demand reconsideration of the ethics of dual-role consent. Here, we examine three arguments advanced against dual-role consent: that it creates role conflict for the (...) physician-investigator; that it can compromise the voluntariness of the patient-participant’s consent; and that it promotes therapeutic misconceptions. Although these concerns have merit in some circumstances, they are not dispositive in all cases. Rather, their force—and the ethical acceptability of dual-role consent—varies with features of the particular study. As research participation more closely approximates usual care, it becomes increasingly acceptable, or even preferable, for physicians to seek consent for research from their own patients. It is time for a more nuanced approach to dual-role consent. (shrink)

The authors interpret the data to mean that patients think that their physicians should make relevant decisions in Learning Health System based trials, and label that as being of 'utmost importance'. However, the patients themselves (in the excerpts provided) emphasize that trust in physicians is instrumental for obtaining protection of patient's bests interests (which seems to be of utmost importance for patients). Furthermore, the perceived bias regarding outcome certainty deserves more discussion. Namely, the decision to defer to physician's opinion is (...) linked to perceived certainty of best clinical outcomes and instrumental for protection of best interest, while it lacks appreciation of the level of uncertainty that exists in clinical decision-making. Finally, a discussion on what are the implications of patient perspectives for individual, vs. relational autonomy is something the authors don't pursue, but instead use "physician-patient autonomy" throughout the paper. (shrink)

Arguments in favor of greater research-practice integration in medicine have tended to be ethical, political, or pragmatic. There are good epistemic reasons to pursue greater integration, and it is important to think through these reasons in order to avoid inadvertently designing new systems in ways that replicate the epistemic elitism common within current systems. Meaningful transformation within health care is possible with close attention to all reasons in favor of greater research-practice integration, including epistemic reasons.

Background The use of Artificial Intelligence (AI) has the potential to provide relief in the challenging and often stressful clinical setting for physicians. So far, however, the actual changes in work for physicians remain a prediction for the future, including new demands on the social level of medical practice. Thus, the question of how the requirements for physicians will change due to the implementation of AI is addressed. Methods The question is approached through conceptual considerations based on the potentials that (...) AI already offer and the focus on central normative concepts of trust, explainability, and responsibility which play an important role when implementing AI in everyday clinical practice. Conclusion Interpersonal communication will not disappear upon implementation of AI. Instead, it is much more likely that the exchange between various actors in medical practice will become increasingly important. This adds another level of complexity to practical concepts such as Shared-Decision-Making, which must be addressed in empirical research, including the involvement of AI systems as actors in communication. (shrink)

Volume 20, Issue 5, June 2020, Page 31-33.

Increasing adoption of electronic health records in hospitals provides new opportunities for patient data to support public health advances. Such learning healthcare models have generated ethical debate in high-income countries, including on the role of patient and public consent and engagement. Increasing use of electronic health records in low-middle income countries offers important potential to fast-track healthcare improvements in these settings, where a disproportionate burden of global morbidity occurs. Core ethical issues have been raised around the role and form of (...) information sharing processes for learning healthcare systems, including individual consent and individual and public general notification processes, but little research has focused on this perspective in low-middle income countries. We conducted a qualitative study on the role of information sharing and governance processes for inpatient data re-use, using in-depth interviews with 34 health stakeholders at two public hospitals on the Kenyan coast, including health managers, providers and researchers. Data were collected between March and July 2016 and analysed using a framework approach, with Nvivo 10 software to support data management. Most forms of clinical data re-use were seen as an important public health good. Individual consent and general notification processes were often argued as important, but contingent on interrelated influences of the type of data, use and secondary user. Underlying concerns were linked to issues of patient privacy and autonomy; perceived risks to trust in health systems; and fairness in how data would be used, particularly for non-public sector re-users. Support for engagement often turned on the anticipated outcomes of information-sharing processes, as building or undermining trust in healthcare systems. As reported in high income countries, learning healthcare systems in low-middle counties may generate a core ethical tension between supporting a public good and respecting patient autonomy and privacy, with the maintenance of public trust acting as a core requirement. While more evidence is needed on patient and public perspectives on learning healthcare activities, greater collaboration between public health and research governance systems is likely to support the development of efficient and locally responsive learning healthcare activities in LMICs. (shrink)