Ethics and Consent in the (Sociotechnical) Wild [BOOK CHAPTER]

Ethics and Consent in the (Sociotechnical) Wild [BOOK CHAPTER]
Ewa Luger, Tom Rodden
Into the Wild: Beyond the Design Research Lab, 4 July 2019; pp 149-172
Abstract
When we speak of ethics, we refer to the articulation of moral principles intended to promote societal and individual good. Derived of moral philosophy, they describe the codified process by which we determine how and why specific human conduct might be deemed right or wrong, good or bad. This is especially critical in the context of human-subjects research, where ill-considered interventions may otherwise result in harm to participants. Socio-technical studies conducted in naturalistic settings, what HCI terms ‘in the wild’ research, present some tensions with our current approaches to ethical practice. In particular, the ways in which we inform, secure and support participant consent. This chapter explores these emerging tensions and, through the voices of interviewed experts, highlights some of the issues arising around user consent and sociotechnical systems.

Editor’s note: Emery’s (1969) sociotechnical systems model of organizations speaks to when the technological, social, and managerial components interact. The technological system includes all the equipment, infrastructure, and technology in the workplace. The social system includes cultural and other diverse groups and individuals, and the social processes and informal channels used to communicate and negotiate in the workplace. The managerial system is concerned with power and authority within the organization, including decision making and formal lines of communication.

Government Policy Experiments and Informed Consent

Government Policy Experiments and Informed Consent
Douglas MacKay, Averi Chakrabarti
Public Health Ethics, July 2019; 12(2) pp 188–201
Abstract
Governments are increasingly making use of field experiments to evaluate policy interventions in the spheres of education, public health and welfare. However, the research ethics literature is largely focused on the clinical context, leaving investigators, institutional review boards and government agencies with few resources to draw on to address the ethical questions they face regarding such experiments. In this article, we aim to help address this problem, investigating the conditions under which informed consent is required for ethical policy research conducted or authorized by government. We argue that investigators need not secure participants’ informed consent when conducting government policy experiments if: (i) the government institution conducting or authorizing the experiment possesses a right to rule over the spheres of policy targeted by the research; and (ii) data collection does not involve the violation of participants’ autonomy rights.

Philosophical Basis of Informed Consent, Informed Refusal and Documentation of Medical Information into Medical Record

Philosophical Basis of Informed Consent, Informed Refusal and Documentation of Medical Information into Medical Record
Ismijatie Jenie, Ahdiana Yuni Lestari
Journal Media Hukum, June 2019; 26(1) pp 60-70
Open Access
Abstract
Information delivered by the medical professionals to the patients in their initial communication is crucial in establishing the therapeutic contract (transaction). Based on that information, the patient will decide whether to accept or to refuse the proposed medical treatment. This paper discusses the philosophical basis of the Informed Consent, Informed Refusal and the documentation of medical information into Medical Record. This normative legal research is carried out by library-based study on primary and secondary legal materials. Besides descriptive-analytical approach, the study also employs comparative approach. The comparison is made between continental legal system, common law system, and the Islamic legal system. It is found that philosophical basis of informed consent, informed refusal and documentation of medical information into medical record is basically to protect the patients’ dignity and to maintain their trust and cooperation. Furthermore, from the Islamic perspective the establishment of informed consent is to respect the privacy to blood, property, and family. In addition, the documentation of medical information into the medical record is to give legal protection in the form of strong evidence both for the health providers and health receivers in the event of a medical dispute.

Editor’s note: MEDIA HUKUM (JMH) is journal published by Faculty of Law Universitas Muhammadiyah Yogyakarta. JMH publishes scientific articles that related in law, development and harmonization of Shariah and positive law in Indonesia.

Factors associated with refusal or acceptance of older patients (≥ 65 years) to provide consent to participate in clinical research in cardiology: a qualitative study

Factors associated with refusal or acceptance of older patients (≥ 65 years) to provide consent to participate in clinical research in cardiology: a qualitative study
Fiona Ecarnot, Nicolas Meunier-Beillard, Jean-Pierre Quenot, Nicolas Meneveau
Aging Clinical and Experimental Research, 21 March 2019; pp 1–8
Background
Clinical research is an essential step in the successful translation of knowledge from basic research into concrete clinical applications, yet many people are reluctant to provide consent when actually approached to actively participate in clinical trials.
Aims
We investigated the factors that influence older patient’s (≥ 65 years) decisions to accept or refuse to participate in a prospective randomized clinical trial in secondary prevention after acute coronary syndrome.
Methods
Qualitative approach based on individual semi-structured interviews with patients who were approached for consent to participate in a currently ongoing clinical trial was adopted. Patients were interviewed after the consent process (8 accepted; 8 refused the trial). Interviews were analysed using grounded theory methodology.
Results
Sixteen patients aged ≥ 65 years participated. The main concept to emerge from these interviews is that the actual trial itself does not appear to be the primary determinant in the decision to participate in clinical research. Rather, patients’ decisions to participate (or not) in clinical research appear to be primarily determined by their capacity to deal with the current health event that has disrupted their life, and by their available mental and physical resources.
Discussion and conclusion
Older patients display varying levels of engagement in their own health, ranging from low engagement with high trust in the medical profession, to high engagement mirrored by distrust of the medical profession. Structural conditions, such as personal benefit from trial participation, or logistic barriers to participation, seem to affect both accepters and refusers in the same manner.

Adverse Childhood Experiences and Resilience: Implications for Marginalized and Vulnerable Young People

Adverse Childhood Experiences and Resilience: Implications for Marginalized and Vulnerable Young People
Scott B. Harpin
Journal of Adolescent Health, January 2019 Volume 64, Issue 1, p1-140
Editorials
Excerpt

This month’s Journal of Adolescent Health features a fascinating and innovative study by epidemiologists Clements-Nolle and Waddington [1], examining the roles that resilience and youth assets play in mitigating emotional distress for youth in two U.S. juvenile corrections systems. This piece brings together an amalgam of youth development concepts in a manner that elegantly explains their positive power in the lives of marginalized youth. While significant findings of the protective buffering of resilience among teens are not new to adolescent research—as pointed out by the authors—the strength of these findings among a large sample of our most vulnerable adolescents is very important for those of us working with similar populations of young people. The unifying factor is how youth are getting through their days having lived through any number of Adverse Childhood Experiences (ACEs)… _