Issues of Informed Consent from Persons with Dementia When Employing Assistive Technologies [BOOK CHAPTER]
Peter Novitzky, Cynthia Chen, Alan F. Smeaton, Renaat Verbruggen, Bert Gordijn
Intelligent Assistive Technologies for Dementia, 14 October 2019; Chapter 10
Excerpt
Informed consent is one of the cornerstones and requirements sine qua non of modern medical research and clinical practice. It developed relatively quickly to gain great importance, despite initial setbacks. The requirement of informed consent applies to all subjects of medical research and therapy, including persons with dementia (PwDs), whose impaired competence to provide valid informed consent poses particular challenges…

Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research [BOOK CHAPTER]
Britteny Howell, Karrie Shogren
Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation, 5 September 2019; Chapter 3
Excerpt
Approximately 1–3% of the world’s population experiences an intellectual disability (ID)… Despite social and medical gains over the past several decades, people with ID are significantly more likely to experience poorer health and quality of life outcomes than people without… Research participation can play an important role in reducing such persistent disparities; however, people with ID remain under-represented in research for a variety of reasons, including the assumption that they are unable to provide informed consent for participation…

Using Ethnographic Methods to Determine Capacity to Consent amongst Individuals Diagnosed with Chronic Mental Illnesses [BOOK CHAPTER]
Saira A. Mehmood
Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation, 5 September 2019; Chapter 14
Introduction
This chapter reports on an ethnographic research project conducted with people diagnosed with chronic mental illnesses and often economic and educational vulnerabilities as well. It focuses particularly on strategies for assessing capacity to consent…

Repurposing Ethnography to Assess Consent Capacity [BOOK CHAPTER]
Megan Wright
Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation, 5 September 2019; Chapter 24
Introduction
Saira Mehmood illustrates how participant observation, an ethnographic method, can be applied to asses research consent capacity for persons with chronic mental illness who use mental health services at a non-profit organization. Through observation of and interaction with prospective participants and organization staff members, Mehmood was able to get a sense of a mental health service user’s decisional capacity and vulnerability. While this is a novel and beneficial approach to assessing consent capacity, questions remain about its application, appropriateness, and usefulness in other contexts.

Decisional capacity to consent to treatment and anaesthesia in patients over the age of 60 undergoing major orthopaedic surgery
Research Article 
Gabriele Mandarelli, Giovanna Parmigiani, Felice Carabellese, Silvia Codella, Paolo Roma, Domitilla Brancadoro, Andrea Ferretti, Lucio Alessandro, Giovanni Pinto, Stefano Ferracuti
Medicine Science and the Law, 1 August 2019 
Abstract
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.

The Patients Have a Story to Tell: Informed Consent for People who use Illicit Opiates in a Qualitative Research Project
Jane McCall, J. Craig Phillips, Andrew Estefan
Canadian Society of Addiction Medicine, November 2018
Open Access
Abstract
This paper discusses the ethical issues that arise when seeking informed consent from people who use illicit opiates. There is a significant discourse in the literature that opines that people who use illicit opiates are unable to provide informed consent due to withdrawal symptoms and cognitive impairment as a result of opioid use. This paper outlines the ethical issues that have been discussed in relation to this issue, reviews the findings of a study in which staff were asked their opinions about their patients’ ability to provide informed consent and discusses the issues that arise when patients are not allowed to consent to research.