Privacy and Accountability in Black-Box Medicine

Black-box medicine—the use of big data and sophisticated machine learning techniques for health-care applications—could be the future of personalized medicine. Black-box medicine promises to make it easier to diagnose rare diseases and conditions, identify the most promising treatments, and allocate scarce resources among different patients. But to succeed, it must overcome two separate, but related, problems: patient privacy and algorithmic accountability. Privacy is a problem because researchers need access to huge amounts of patient health information to generate useful medical predictions. And accountability is a problem because black-box algorithms must be verified by outsiders to ensure they are accurate and unbiased, but this means giving outsiders access to this health information. This article examines the tension between the twin goals of privacy and accountability and develops a framework for balancing that tension. It proposes three pillars for an effective system of privacy-preserving accountability: substantive limitations on the collection, use, and disclosure of patient information; independent gatekeepers regulating information sharing between those developing and verifying black-box algorithms; and information-security requirements to prevent unintentional disclosures of patient information. The article examines and draws on a similar debate in the field of clinical trials, where disclosing information from past trials can lead to new treatments but also threatens patient privacy

Disclosing Privacy and Discrimination Protections in Informed Consent

Recent empirical work shows that providing greater detail about limitations of genetic anti-discrimination protections in informed consent documents is likely to lower individuals’ willingness to participate in research studies. This article presents these empirical findings and analyzes the implications of the findings for clinical care and for privacy and discrimination risks beyond genetic discrimination. While the paper argues that further research is needed to fully understand the potential implications of disclosure of legal protections in the clinical setting, there are clear implications in the research setting. Since individuals are likely to alter their decision to participate in research based on the depth of information provided, informed consent should contain detailed information about privacy and discrimination risks. However, for participants to truly understand the risk of loss of privacy and potential for discrimination that flows from information disclosures in research, they arguably must have a robust understanding of both when and how information may be shared, but also the legal protections and limitations that govern use of that data. Now, more than ever, it is essential to understand the privacy risks associated with joining a study since research trends related to big data and secondary research are vastly increasing the privacy risks for participants. Yet, while it is easy to state that individuals should be told of both privacy and anti-discrimination laws and their respective limitations, disclosing these in practice is much more complex. For every law, there are countless limitations that could be enumerated, but such disclosures would quickly make informed consent unwieldy and counterproductive. Thus, this paper argues that institutional review boards (“IRBs”) can help to find a limiting principle to the disclosures by assessing the likelihood of harm and contextualizing the risks to the study population. This will balance between over- and under-disclosure of legal protections and limitations while still fulfilling important foundational goals of informed consent

Children's Databases - Safety and Privacy

This report describes in detail the policy background, the systems that are being built, the problems with them, and the legal situation in the UK. An appendix looks at Europe, and examines in particular detail how France and Germany have dealt with these issues. Our report concludes with three suggested regulatory action strategies for the Commissioner: one minimal strategy in which he tackles only the clear breaches of the law, one moderate strategy in which he seeks to educate departments and agencies and guide them towards best practice, and finally a vigorous option in which he would seek to bring UK data protection practice in these areas more in line with normal practice in Europe, and indeed with our obligations under European law

The Impacts of Privacy Rules on Users' Perception on Internet of Things (IoT) Applications: Focusing on Smart Home Security Service

Department of Management EngineeringAs communication and information technologies advance, the Internet of Things (IoT) has changed the way people live. In particular, as smart home security services have been widely commercialized, it is necessary to examine consumer perception. However, there is little research that explains the general perception of IoT and smart home services. This article will utilize communication privacy management theory and privacy calculus theory to investigate how options to protect privacy affect how users perceive benefits and costs and how those perceptions affect individuals??? intentions to use of smart home service. Scenario-based experiments were conducted, and perceived benefits and costs were treated as formative second-order constructs. The results of PLS analysis in the study showed that smart home options to protect privacy decreased perceived benefits and increased perceived costs. In addition, the perceived benefits and perceived costs significantly affected the intention to use smart home security services. This research contributes to the field of IoT and smart home research and gives practitioners notable guidelines.ope

Framework for better living with HIV in England

1 Introduction and overview 1.1 The goal, purpose and scope of the framework This framework is the first of its kind in the UK. It describes the shared aspirations of a group of agencies for the lives of people diagnosed with HIV in England. The overarching goal of the framework is: All people with HIV are enabled to have the maximum level of health, well-being, quality of life and social integration. This is no less than the majority of people in the country expect for themselves. However, numerous obstacles prevent people with HIV from achieving this goal. These obstacles are not about having the virus but about how people with the virus are treated. This overarching goal is the situation we want to bring about. We detail this goal in seventeen subsidiary goals (what we want to happen). Each of these has a number of related aims and target groups (what we want individuals and groups to do to bring about the goal). The framework starts with the individual and seeks to bring about the conditions most favourable to individual self-determination and self-empowerment. The purpose of the framework is 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, effective and sufficient information, social support and social care services. • Minimise social, economic, governmental and judicial change detrimental to the rights and well-being of people with HIV. • Build consensus among those with a responsibility for promoting the well-being and rights of people with HIV. • Provide benchmarks against which the activities of a range of key stakeholders can be assessed, critiqued and coordinated. The framework does not describe all the activities of the organisations represented in the Framework Development Group (see section 1.4). Nor can these organisations undertake all the interventions necessary within the framework. Rather, the framework seeks to mobilise and coordinate the actions of a broad range of individuals and groups, from people with HIV themselves to government ministers. The framework primarily seeks to benefit people with diagnosed HIV infection. It is concerned with the health and well-being of those diagnosed with HIV and not those with undiagnosed HIV or those who might become infected (HIV prevention).As we are concerned with the lives of people with HIV after diagnosis, this framework is not focused on increasing HIV testing or HIV diagnosis nor does it attend to the needs of the broader population affected by HIV except where they relate to people with diagnosed HIV

How Registries Can Help Performance Measurement Improve Care

Suggests ways to better utilize databases of clinical information to evaluate care processes and outcomes and improve measurements of healthcare quality and costs, comparative clinical effectiveness research, and medical product safety surveillance