The DECIDE Framework: Describing Ethical Choices in Digital-Behavioral-Data Explorations

Behavioral sciences now routinely rely on digital data, supported by digital technologies and platforms. This has resulted in an abundance of new ethical challenges for researchers and ethical review boards. Several contemporary high-profile cases emphasize that ethical issues often surface after the research is published, once harm has already occurred. Consequently, implementing safeguards in digital behavioral research is often reactionary and fails to adequately prevent harm. In response, we propose the DECIDE framework which encourages ethical reflections and discussions throughout all stages of the research process. The framework presents several questions designed to help researchers view their work from new perspectives and uncover ethical issues they might not have anticipated. We provide several resources to support researchers with their ethical reflections and discussions, including (i) The DECIDE Framework Spreadsheet, (ii) The DECIDE Desktop App, (iii) Information Documents, and (iv) Flowcharts. This article provides suggestions on how to use each resource to encourage proactive discussions of how ethical issues may apply to specific research contexts. By promoting continous ethical considerations, safeguards can be put in place throughout the research project, even after research commencement. The DECIDE framework shifts ethical reflection away from being reactive towards a more proactive endeavor, reducing the risk of harm, and the misuse of digital behavioral data.

Behavioral sciences now routinely rely on digital data, supported by digital technologies and platforms. This has resulted in an abundance of new ethical challenges for researchers and ethical review boards. Several contemporary high-profile cases emphasize that ethical issues often surface after the research is published, once harm has already occurred. Consequently, implementing safeguards in digital behavioral research is often reactionary and fails to adequately prevent harm. In response, we propose the DECIDE framework which encourages ethical reflections and discussions throughout all stages of the research process. The framework presents several questions designed to help researchers view their work from new perspectives and uncover ethical issues they might not have anticipated. We provide several resources to support researchers with their ethical reflections and discussions, including (i) The DECIDE Framework Spreadsheet, (ii) The DECIDE Desktop App, (iii) Information Documents, and (iv) Flowcharts. This article provides suggestions on how to use each resource to encourage proactive discussions of how ethical issues may apply to specific research contexts. By promoting continous ethical considerations, safeguards can be put in place throughout the research project, even after research commencement. The DECIDE framework shifts ethical reflection away from being reactive towards a more proactive endeavor, reducing the risk of harm, and the misuse of digital behavioral data.

Big data phenotyping in rare diseases: some ethical issues

Biological samples—such as tissues, blood and cells—are an increasingly important tool for research into human diseases and their genetic and physiological causes. To ease their storage and access, many of these samples are now stored in biobanks. The number of human biological samples in such collections amounted to several hundred million in 1999 in the USA alone—about one sample per US citizen (Eiseman, 2000; Azarow et al , 2003)—and is increasing rapidly. Three‐quarters of the clinical trials that drug companies submit to the US Food and Drug Administration (Rockville, MD, USA) for approval now include a provision for sampling and storing human tissue for future genetic analysis (Abbott, 2003). At the same time, there is a boom of population biobanks, as more and more countries establish new sample collections (Kaiser, 2002). Among the best known are: the Icelandic Health Sector Database; the Estonian Genome Project; the UK Biobank; the CARTaGENE Project in Quebec, Canada; the Banco Nacional de ADN in Spain; the International HapMap Project; and several US biobanks, such as the National Children's Study, the Marshfield Clinic's Personalized Medicine Research Project and the National Health and Nutrition Examinations Surveys. ![][1] This boom of biobanks has spawned a ‘boomlet’ of regulations and guidelines, which has created controversies, particularly about the importance and definition of informed consent. The consent of participants is usually required before biobank samples can be used in research, but the nature of this consent, and how it is obtained, vary widely. Many European guidelines take the view that general consent is acceptable to use samples for future, as yet unspecified, research projects; US and Canadian policy follows a more rigorous standard of consent. Until 2004, both Europe and the USA considered coded and linked anonymized samples—in which a code links the sample to its donor—as identifiable and therefore … [1]: /embed/graphic-1.gif

Current ethical and social issues in epidemiology.

The Institutional Logic of Digitalization

While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched using electronic academic databases for articles that provided explicit ethical analysis or presented empirical research that directly addressed ethical issues related to digital data collection used in research with minors. After screening 1,156 titles and abstracts, and reviewing 73 full-text articles, 20 articles were included in this review. Themes which emerged across the reviewed literature included: consent, data handling, minors’ data rights, observing behaviors that may result in risk of harm to participants or others, private versus public conceptualizations of data generated through social media, and gatekeeping. Our findings indicate a degree of uncertainty which invariably exists with regards to the ethics of research that involves minors and digital technology. The reviewed literature suggests that this uncertainty can often lead to the preclusion of minors from otherwise important lines of research inquiry. While uncertainty warrants ethical consideration, increased ethical scrutiny and restricting the conduct of such research raises its own ethical challenges. We conclude by discussing and recommending the ethical merits of co-producing ethical practice between researchers and minors as a mechanism to proceed with such research while addressing concerns around uncertainty.

Enabling digitisation to reduce risk in the food system

Role of Clinical Ethicists in Making Decisions About Levels of Care in the Intensive Care Unit

Digital phenotyping is the term given to the capturing and use of user log data from health and wellbeing technologies used in apps and cloud-based services. This paper explores ethical issues in making use of digital phenotype data in the arena of digital health interventions. Products and services based on digital wellbeing technologies typically include mobile device apps as well as browser-based apps to a lesser extent, and can include telephony-based services, text-based chatbots, and voice-activated chatbots. Many of these digital products and services are simultaneously available across many channels in order to maximize availability for users. Digital wellbeing technologies offer useful methods for real-time data capture of the interactions of users with the products and services. It is possible to design what data are recorded, how and where it may be stored, and, crucially, how it can be analyzed to reveal individual or collective usage patterns. The paper also examines digital phenotyping workflows, before enumerating the ethical concerns pertaining to different types of digital phenotype data, highlighting ethical considerations for collection, storage, and use of the data. A case study of a digital health app is used to illustrate the ethical issues. The case study explores the issues from a perspective of data prospecting and subsequent machine learning. The ethical use of machine learning and artificial intelligence on digital phenotype data and the broader issues in democratizing machine learning and artificial intelligence for digital phenotype data are then explored in detail.

Patients' rights for privacy and confidentiality extend to publications. This author describes how authors, reviewers, and editors can ensure patient confidentiality in manuscripts.

“Take me to the back, or they'll think I am not normal” - Ethical reflections on narrative research with people with dementia living in long-term care institutions

Research ethics and permission.

Ethical reflections over care practices are important. In order to be able to perform such reflections, healthcare professionals must learn to think critically about their care practice. The aim of this study was to evaluate whether an introduction to and practice in ethical reflections in community healthcare have consequences for the healthcare personnel's practice. A mixed-methods design was adopted with five focus group interviews and an electronic questionnaire based on results from the interviews. A total of 29 community healthcare personnel with experience in ethical reflections participated in the interviews. The electronic questionnaire was sent via email to 2382 employees in community healthcare services in 13 municipalities in southern part of Norway. The study was guided by the intentions of the Declaration of Helsinki and ethical standard principles and approved by the Norwegian Social Science Data Services. An introduction to and practice in performing ethical reflections brought about an ethical awareness with understanding and respect for both colleagues and patients. The leader had a key role. Lack of time was a hindrance for ethical reflections. Three factors could predict meaningful ethical reflections: higher age of personnel, higher percentage of employment and longer experience with ethical reflections. According to other studies, ethical reflections may enhance moral development of colleagues and their actions as advocates for the patients. A deepened ethical awareness, professional competency and sufficient time resources will guarantee proper caregiving. A supportive environment that prioritizes participation in reflection meetings is decisive. To practice ethical reflections will provide better care for patients. A challenge for the community healthcare system is to offer adequate positions that provide the personnel an opportunity to be involved as caregivers and to participate in ethical reflections.

BackgroundClinical trials in the ambulance setting are essential for providing the basis for evidence based healthcare in the prehospital environment. As the number and complexity of ambulance trials increases the...