Search

Background: Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods: This paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. Results: This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. Conclusions: We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science. [ABSTRACT FROM AUTHOR]

This paper draws on qualitative research using focus groups involving 38 general practitioners (GPs). It explores their attitudes and feelings about (over-)medicalisation. Our main findings were that GPs had a complex representation of (over-)medicalisation, composed of many professional, social, technological, economic and relational issues. This representation led GPs to feel uncomfortable. They felt pressure from all sides, which led them to question their social roles and responsibilities. We identified four main GP-driven proposals to deal with (over-)medicalisation: (1) focusing on the communication in doctor–patient relationships; (2) grounding practices in evidence-based medicine; (3) relying on clinical skills, experience and intuition; and (4) promoting training, leadership bodies and social movements. Drawing on these proposals, we identify and discuss five paradigms that underpin GPs' attitudes toward (over-)medicalisation: underlying social factors, preventing medicalisation, managing uncertainties, sharing medical decision-making and thinking about care as a rationale. We suggest that these paradigms constitute a defensive posture against GPs' uncomfortable feelings. All five defensive paradigms were identified in our focus groups, echoing contemporary political debates on public health. This non-exhaustive framework forms the outline of what we call ordinary defensive medicine. GPs' uncomfortable feelings are the origin of their defensive solutions and the manifestation of their vulnerability. This professional vulnerability can be shared with the patient's vulnerability. In our view, this creates an opportunity to rediscover patient–doctor relationships and examine patients' and doctors' vulnerabilities together. "There are many cases in which—though the signs of a confusion of tongues between the patient and his doctor are painfully present—there is apparently no open controversy. Some of these cases demonstrate the working of two other, often interlinked, factors. One is the patient's increasing anxiety and despair, resulting in more and more fervently clamouring demands for help. Often the doctor's response is guilt feelings and despair that his most conscientious, most carefully devised examinations do not seem to throw real light on the patient's "illness", that his most erudite, most modern, most circumspect therapy does not bring real relief." (Balint M. The Doctor, His Patient and the Illness. New York: International Universities; 2005. [1957].) "Theories about care put an unprecedented emphasis on vulnerability—taking up that challenge to transform what really counts in today's hospitals implies letting colleagues inside previously closely guarded professional boundaries" (2, our translation). [ABSTRACT FROM AUTHOR]

Gothic literature—a genre brimming with madness, supernaturalism, and psychological terror—offers innumerable case studies potentially representing how psychiatric patients perceive their treatment from healthcare professionals. Charlotte Perkins Gilman's famous 1892 short story "The Yellow Wallpaper" offers a poignant example of this through its fictional narrator, a diarist many interpret to be suffering from postpartum depression. The fiction here does not stray far from reality: Gilman orchestrated her diarist's experience to mirror her own, as both real author and fictional character suffocated from a melancholy only made worse by their physicians' insistence on following the "Rest Cure." While this instruction to cease all work and activity was a prevalent depression treatment at the time, Gilman, through "The Yellow Wallpaper," reveals how the intervention ultimately harmed more than helped because it overlooked her—and, by extension, her fictional diarist's— unique needs and identities. Today, while the ineffective Rest Cure no longer exists, applying observations from "The Yellow Wallpaper" to clinical research calls attention to underrepresentation in treatment development, a costly problem that could be mitigated by mindful incorporation of intersectionality theory into study designs. [ABSTRACT FROM AUTHOR]