scholarly journals NorthBEAT’s Capacity-to-Consent Protocol for Obtaining Informed Consent from Youth Evaluation Participants: An Alternative to Parental Consent

2018 ◽  
Vol 33 (1) ◽  
Author(s):  
Shevaun Nadin ◽  
Mae Katt ◽  
Carolyn Dewa ◽  
Chiachen Cheng
Keyword(s):  
Informed Consent ◽  
Parental Consent ◽  
Ethical Practice ◽  
Services Research ◽  
Services De Santé ◽  
Capacity To Consent ◽  
Evaluation Practice ◽  
Mental Health Services Research ◽  
Feasible Alternative ◽  
Participation In Research

Abstract: Ethical practice compels evaluators to obtain informed consent from evaluation participants. When those participants are minors, parental consent is routinely sought. However, seeking parental consent may not be appropriate in all evaluation contexts. This practice note presents one context (mental health services research in rural Canada) where seeking parental consent for youths’ participation in research was considered unethical and unfeasible. We present a two-step “capacity-to-consent” protocol that we developed to obtain consent from youth participants. This protocol offers an ethical and feasible alternative to seeking parental consent for youth. The implications for evaluation practice are discussed.Résumé : Pour se conformer à des pratiques éthiques, les évaluateurs doivent obte-nir le consentement éclairé de participants au projet. Lorsque ces participants sont des mineurs, le consentement des parents est généralement demandé. Cependant, il n’est pas toujours possible ou souhaitable d’obtenir le consentement des parents dans tous les contextes d’évaluation. La présente note de pratique présente un con-texte (recherche sur les services de santé mentale en milieu rural au Canada) où l’obtention du consentement d’un parent est considérée non éthique et impossible. Nous présentons un protocole en deux étapes de « capacité à consentir » que nous avons mis au point pour obtenir le consentement de jeunes participants. Ce protocole offre une solution de rechange éthique et applicable à l’obtention du consentement des parents pour les jeunes. On discute des ramifications du protocole pour la pratique de l’évaluation.

Decisional capacity to consent to treatment and anaesthesia in patients over the age of 60 undergoing major orthopaedic surgery

2019 ◽  
Vol 59 (4) ◽  
pp. 247-254 ◽  
Author(s):  
Gabriele Mandarelli ◽  
Giovanna Parmigiani ◽  
Felice Carabellese ◽  
Silvia Codella ◽  
Paolo Roma ◽  
...  
Keyword(s):  
Informed Consent ◽  
Orthopaedic Surgery ◽  
Decisional Capacity ◽  
Capacity To Consent ◽  
Capacity Evaluation ◽  
Decision Making Capacity ◽  
Consent To Treatment ◽  
Major Orthopaedic Surgery ◽  
Pain Symptoms ◽  
State Examination

Despite growing attention to the ability of patients to provide informed consent to treatment in different medical settings, few studies have dealt with the issue of informed consent to major orthopaedic surgery in those over the age of 60. This population is at risk of impaired decision-making capacity (DMC) because older age is often associated with a decline in cognitive function, and they often present with anxiety and depressive symptoms, which could also affect their capacity to consent to treatment. Consent to major orthopaedic surgery requires the patient to understand, retain and reason about complex procedures. This study was undertaken to extend the literature on decisional capacity to consent to surgery and anaesthesia of patients over the age of 60 undergoing major orthopaedic surgery. Recruited patients ( N=83) were evaluated using the Aid to Capacity Evaluation, the Beck Depression Inventory, the State–Trait Anxiety Inventory Y, the Mini-Mental State Examination and a visual analogue scale for measuring pain symptomatology. Impairment of medical DMC was common in the overall sample, with about 50% of the recruited patients showing a doubtful ability, or overt inability, to provide informed consent. Poor cognitive functioning was associated with reduced medical DMC, although no association was found between decisional capacity and depressive, anxiety and pain symptoms. These findings underline the need of an in-depth assessment of capacity in older patients undergoing major orthopaedic surgery.

Effect of Informed Parental Consent on Mothers' Knowledge of Newborn Screening

PEDIATRICS ◽  
1983 ◽  
Vol 72 (6) ◽  
pp. 807-812 ◽  
Author(s):  
Neil A. Holtzman ◽  
Ruth Faden ◽  
A. Judith Chwalow ◽  
Susan D. Horn
Keyword(s):  
Informed Consent ◽  
Newborn Screening ◽  
Metabolic Disorders ◽  
Knowledge Score ◽  
Low Risk ◽  
Parental Consent ◽  
Powerful Predictor ◽  
New Mothers ◽  
The Mean ◽  
Informed Parental Consent

To determine whether knowledge was improved as a result of obtaining informed consent from parents for newborn screening of their infants for phenylketonuria (PKU) and other hereditary metabolic disorders, new mothers in seven Maryland hospitals were interviewed either before receiving a standard disclosure (n = 210) or after giving consent (n = 418). The mean knowledge score of the women interviewed after giving consent was significantly higher (P < .001). Receiving the disclosure was a more powerful predictor of knowledge score, accounting for 40% of the variance, than demographic factors, which accounted for 9%. Women whose consent was obtained just prior to discharge tended to have lower knowledge scores than women whose consent was obtained earlier (P = .03). Women with higher knowledge scores were somewhat less likely to favor consent than women with lower scores. Although consent may not be appropriate for some low-risk procedures, informing parents can be easily and inexpensively accomplished.

Autism, Autonomy, and Research

2019 ◽  
pp. 53-64 ◽  
Author(s):  
Kenneth A. Richman
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Ethical Concerns ◽  
Autistic People ◽  
Participation In Research

This chapter addresses ethical issues for informed consent when recruiting autistic participants for research. The process of informed consent for participation in research involves some abilities, such as dialogue and understanding the intentions of the researchers, that can be especially challenging when autistic individuals are being asked to participate. This chapter reviews these abilities, and suggests ways to provide meaningful support to promote autonomy and help researchers meet their responsibilities. Beyond these more general challenges, it explores Hans Jonas’s suggestion that true informed consent for research requires that participants identify with the goals of the researchers. Given the plurality of perspectives on how to respond to autism, Jonas’s ideas point to additional ethical concerns that can arise when autistic people are recruited for research on autism.

Fulfilling the Underlying Purpose of Informed Consent to Research

2001 ◽  
Author(s):  
Jessica W. Berg ◽  
Paul S. Appelbaum ◽  
Charles W. Lidz ◽  
Lisa S. Parker
Keyword(s):  
Informed Consent ◽  
Best Interests ◽  
Research Subjects ◽  
Bodily Integrity ◽  
Traditional Concept ◽  
Treatment Situation ◽  
Consent To Treatment ◽  
History Of ◽  
Participation In Research ◽  
Treatment Settings

To a great extent the underlying purposes of informed consent in research settings resemble those in the treatment situation. Informed consent promotes individuals’ autonomy by allowing subjects to make meaningful decisions about participation in research projects. Informed consent is also a means of reducing inequalities of knowledge and power in the researcher-subject relationship and thus increases the cooperation and compliance of subjects. Increased knowledge also enhances patients’ abilities to make decisions that will protect them from unwanted and undesirable intrusions on bodily integrity, perhaps of even greater importance here than in treatment settings, because of the sorry history of abuses inflicted on research subjects. As great as the similarities are between consent to treatment and consent to research, the differences are equally great. In treatment settings, as already noted, clinicians and patients are presumed to share the same goal: promoting patients’ health. They may disagree over the means, but a general coincidence of interests is ordinarily the rule. Charles Fried calls this confluence of interests the principle of personal care. “The traditional concept of the physician’s relation to his patient is one of unqualified fidelity to that patient’s health. He may certainly not do anything that would impair the patient’s health and he must do everything in his ability to further it”. The essence of this principle is that physicians will not allow any other considerations to impinge on their decisions as to what measures are in their patients’ best interests. Since the goal of scientific investigation is the production of generalizable knowledge, not primarily the promotion of individual health, the interests of subjects and researchers are not identical. Clinician-researchers who are providing treatment to subjects in their research studies may feel this clash of interests most acutely as steps taken to protect the generalizability of the data may conflict with the maximization of benefit to individual subjects (2). The need to take this conflict into account in the decisionmaking process is largely responsible for the differences between consent to research and consent to treatment.

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