Legal, ethical, and wider implications of suicide risk detection systems in social media platforms

Suicide remains a problem of public health importance worldwide. Cognizant of the emerging links between social media use and suicide, social media platforms, such as Facebook, have developed automated algorithms to detect suicidal behavior. While seemingly a well-intentioned adjunct to public health, there are several ethical and legal concerns to this approach. For example, the role of consent to use individual data in this manner has only been given cursory attention. Social media users may not even be aware that their social media posts, movements, and Internet searches are being analyzed by non-health professionals, who have the decision-making ability to involve law enforcement upon suspicion of potential self-harm. Failure to obtain such consent presents privacy risks and can lead to exposure and wider potential harms. We argue that Facebook's practices in this area should be subject to well-established protocols.' These should resemble those utilized in the field of human subjects research, which upholds standardized, agreed-upon, and well-recognized ethical practices based on generations of precedent. Prior to collecting sensitive data from social media users, an ethical review process should be carried out. The fiduciary framework seems to resonate with the emergent roles and obligations of social media platforms to accept more responsibility for the content being shared

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols

mHealth Research Applied to Regulated and Unregulated Behavioral Health Sciences

Behavioral scientists are developing new methods and frameworks that leverage mobile health technologies to optimize individual level behavior change. Pervasive sensors and mobile apps allow researchers to passively observe human behaviors “in the wild” 24/7 which supports delivery of personalized interventions in the real-world environment. This is all possible because these technologies contain an incredible array of sensors that allow applications to constantly record user location and can contextualize current environmental conditions through barometers, thermometers, and ambient light sensors and can also capture audio and video of the user and their surroundings through multiple integrated high-definition cameras and microphones. These tools are a game changer in behavioral health research and, not surprisingly, introduce new ethical, regulatory/legal and social implications described in this article

Twelve tips to teaching (legal and ethical aspects of) research ethics/responsible conduct of research

Teaching research ethics is a requirement within modern health science, nursing and medical curricula. We have drawn on our experience of designing, developing and integrating the teaching of research ethics in a new, fully integrated medical school curriculum, delivered using Problem Based Learning and the recent literature relating to the teaching of research ethics to produce the following 12 Top Tips designed to encourage readers to seek opportunities to embed this teaching within a variety of curricula

Framework for better living with HIV in England

Duration: April 2007 - May 2009 Sigma Research was funded by Terrence Higgins Trust to co-ordinate the development of a framework to address the health, social care, support and information needs of people with diagnosed HIV in England. It has now been published as the Framework for better living with HIV in England. The over-arching goal of the framework is that all people with diagnosed HIV in England "are enabled to have the maximum level of health, well-being, quality of life and social integration". In its explanation of how this should occur the document presents a road map for social care, support and information provision to people with diagnosed HIV in England. By establishing and communicating aims and objectives, the framework should build consensus and provide a means to establish how interventions could be prioritised and coordinated. The key drivers for the framework were clearly articulated ethical principles, agreed by all those who sign up to it, and an inclusive social development / health promotion approach. Sigma Research worked on the framework with a range of other organisations who sent representatives to a Framework Development Group (see below for membership). The framework is evidence-based and seeks to: Promote and protect the rights and well-being of all people with HIV in England. Maximise the capacity of individuals and groups of people with HIV to care for, advocate and represent themselves effectively. Improve and protect access to appropriate information, social support, social care and clinical services. Minimise social, economic, governmental and judicial change detrimental to the health and well being of people with HIV. Alongside the development of the framework, Sigma Research undertook a national needs assessment among people with diagnosed HIV across the UK called What do you need?. These two projects informed and supported each other. Framework Development Group included: African HV Policy Network Black Health Agency George House Trust NAM NAT (National AIDS Trust) Positively Women Terrence Higgins Trus

The public sector's role in infertility management in India.

This objective of this paper is to explore the public sector's role in infertility management in India. It focuses on services available in the public sector, problems faced by and critiques of public sector providers. A postal survey was conducted with a sample of 6000 gynaecologists and in-depth interviews were conducted with 39 gynaecologists in four cities. The role of the public sector in infertility management is weak as even basic investigations and services were limited or incomplete. Inadequate infrastructure, inappropriate management including time management, lack of information and training, absence of clear protocols at all levels, private practice by public health doctors, pre-occupation with other health issues and lack of regulation were the main problems mentioned by providers. Amongst key recommendations are realistic and low-cost management, streamlining and regulating services, counselling of couples, providing information and raising awareness of patients, health personnel and policy makers

Conducting Controlled human infection model studies in India is an ethical obligation

Weighing competing obligations and achieving the “greatest balance” of right over wrong guides an individual, an agency or a country in determining what ought to be done in an ethically challenging situation. Conducting controlled human infection model (CHIM) studies in India is one such situation. The ethical challenge in conducting a CHIM study lies in completing the difficult task of introducing standardised, attenuated strains of micro-organisms into normal healthy volunteers, at the same time ensuring the safety of these healthy individuals from potential and completely informed risks in a fashion that is transparent and accountable. The bar is further raised against the background of already fragile public confidence in biomedical research in India; especially when “deliberate” introduction of microbial agents into healthy individuals is involved, with the larger altruistic objective of gain to society as a whole. This paper discusses the uses of CHIM studies with respect to the larger scientific Indian research enterprise of the 21st century. It further explores etic and emic perspectives in conducting such trials in India and seeks to generate an ethical coherence to the justification for conducting CHIM studies in India. The paper deliberates on ethical issues arising out of conducting CHIM studies and reflects on how developing the capacity for CHIM studies in India is likely to strengthen the health research and development sector in the country

Virtual Clinical Trials: One Step Forward, Two Steps Back

Virtual clinical trials have entered the medical research landscape. Today’s clinical trials recruit subjects online, obtain informed consent online, send treatments such as medications or devices to the subjects’ homes, and require subjects to record their responses online. Virtual clinical trials could be a way to democratize clinical research and circumvent geographical limitations by allowing access to clinical research for people who live far from traditional medical research centers. But virtual clinical trials also depart dramatically from traditional medical research studies in ways that can harm individuals and the public at large. This article addresses the issues presented by virtual clinical trials with regard to: (1) recruitment methods; (2) informed consent; (3) confidentiality; (4) potential risks to the subjects; and (5) the safety and efficacy of treatments that are approved

Professional boundaries: research report

In 2008 the General Social Care Council (GSCC) published Raising standards: Social work conduct in England 2003-2008. This constituted the GSCC’s first report covering the work undertaken to uphold standards and protect people who use social care services. The GSCC’s analysis revealed that a considerable proportion of conduct cases, some 40%, involved allegations of 'inappropriate relations'. In the light of this finding, and the release by the Council for Healthcare Regulatory Excellence (CHRE) of sexual boundaries guidance for healthcare workers at the beginning of this year (Halter et al, 2009), the GSCC committed itself to exploring the possibility of producing professional boundaries guidance for social workers. To begin this exploration, the GSCC commissioned a study in early 2009.This is the report of that study. There were two main purposes. First, to establish what professional boundaries1 guidance currently exists for social workers, or for sections of the workforce that includes social workers in the United Kingdom, and the content of any such guidance. Secondly, to identify and discuss a number of other examples of professional boundaries guidance to act as points of reference for the GSCC’s project. The aim was to identify and discuss examples relevant to the GSCC’s project