Ethical dilemmas in social media health research [CONFERENCE ABSTRACT]
Dan Wolf Meyrowitsch, Jacob Lauge Thomassen, Flemming Konradsen, Natasja Kingod, Jane Brandt Sørensen
The Digitally Engaged Patient, 11-12 June 2019; Copenhagen, Denmark
Abstract
An increasing number of individuals worldwide engage in online communication concerning human health and researchers have identified the need to gain further insights on how individuals and communities engage and respond to particular health topics discussed on social media. However, this type of research is not without ethical dilemmas. Though ethical guidelines on the conduct of online research do exist, there is a lack of practical tools and procedures for the initiation and implementation of research on social media platforms in a thoughtful and respectful manner. When carrying out research involving human subjects, three ethical concepts are central: 1) confidentiality; 2) anonymity; and 3) informed consent. These dimensions need rethinking when conducting research on social media platforms. For instance, a researcher stepping into a social media community would initially present herself, the objective of the research, and implications for participants – as in any other research project. However, it is a challenge to maintain informed consent to a study in a rapidly changing online community with a changing composition of members. Based on hands-on experiences from an ongoing research project in a Danish Facebook group of users and group administrators living with suicidal thoughts, we have encountered a range of challenges related to all three ethical concepts. These challenges have lead us to explore new paths and solutions. In this presentation, we will share our experiences and reflections.

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
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
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.