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Any proposed DTP genomic research would need to comply with the specific requirements of Chapter 3.3 to be satisfactorily addressed for ethical approval. 1.2 The National Health and Medical Research Council has the issue of Direct to Customer Genetic Testing under consideration and has published three relevant information documents.1 1.3 The Commonwealth Australia Government, Department of Health has issued guidance for the Provision of Direct-to-Consumer Genetic Tests: Guiding Principles for Providers.2 The Australian Genomics Health Alliance (AGHA) published a news page on Understanding Direct-to-Consumer Genetic Testing, with information on clinical-grade testing.3 2. There is an over-riding requirement to respect “beliefs, customs and cultural heritage, and local laws” of all participants in other countries.5 The Australian HREC would require approval from the research ethics review body in the other country, where there is one.6 Where there are no “ethics approval processes” in the overseas country, research participants must be “accorded no less respect than [the] National Statement requires,”7 as well as these specific elements for Research generally in Chapter 3.1 and Genomic Research, in particular, as set out in Chapter 3.3.8 As far as is necessary to satisfy the requirements of paragraphs 1.10 to 1.13, the design and conduct of the research should reflect continuing consultation with the local participant population and the communities to which they belong.9 The Australian researcher conducting DTP genomic research in another country must also comply with the Australian Code for the Responsible Conduct of Research, 2018.10 4. Please consider the perspectives of the public, research participants, socially-defined groups (e.g., indigenous or minority populations), researchers, and other professional or government entities. Specific issues with specific research participants, such as socially-defined groups, including as examples indigenous or minority populations, would be critical components of the research design and ethical approval processes.
Journal Article
Covid-19 and Health Care’s Digital Revolution
In the face of the Covid-19 pandemic, Americans are waking up to the limitations of their analogue health care system. It seems clear that we need an immediate digital revolution, pursued on several fronts, to address this crisis.
Journal Article
Barriers to and Facilitators of the Use of Mobile Health Apps From a Security Perspective: Mixed-Methods Study
A large number of mobile health (mHealth) apps have been created to help users to manage their health or receive health care services. Many of these mHealth apps have proven to be helpful for maintaining or improving their users' health. However, many people still choose not to use mHealth apps or only use them for a short period. One of the reasons behind this lack of use is the concern for their health information security and privacy.
The goal of this study was to determine the relationship between users' characteristics and their security and privacy concerns and to identify desired security features in mHealth apps, which could reduce these concerns.
A questionnaire was designed and validated by the research team. This questionnaire was then used to determine mobile app users' security and privacy concerns regarding personal health data in mHealth apps as well as the security features most users' desire. A semistructured interview was used to identify barriers to and facilitators of adopting mHealth apps.
In total, 117 randomly selected study participants from a large pool took part in this study and provided responses to the validated questionnaire and the semistructured interview questions. The results indicate that most study participants did have concerns about their privacy when using mHealth apps. They also expressed their preferences regarding several security features in mHealth apps, such as regular password updates, remote wipe, user consent, and access control. An association between their demographic characteristics and their concerns and preferences in security and privacy was identified; however, in most cases, the differences among the different demographic groups were not statistically significant, except for a few very specific aspects. These study participants also indicated that the cost of apps and lack of security features in mHealth apps were barriers for adoption, whereas having free apps, strong but easy-to-use security features, and clear user protection privacy policies might encourage them to use mHealth apps in their health management.
This questionnaire and interview study verified the security and privacy concerns of mHealth app users, identified the desired security and privacy features, and determined specific barriers to and facilitators of users adopting mHealth apps. The results can be used to guide mHealth app developers to create apps that would be welcomed by users.
Journal Article
Blocking information on COVID-19 can fuel the spread of misinformation
Governments need to think twice before they suppress messages related to COVID-19.
Governments need to think twice before they suppress messages related to COVID-19.
Journal Article
Privacy, Confidentiality, and Health Research
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
eBook
Confusion over Europe’s data-protection law is stalling scientific progress
Two steps will help collaborations worldwide to share information and comply with EU privacy rules.
Confusion over GDPR is stalling scientific progress
Two steps will help collaborations worldwide to share information and comply with EU privacy rules.
“The GDPR has stalled at least 40 clinical and observational studies.”
Journal Article
Introduction to Danish (nationwide) registers on health and social issues: Structure, access, legislation, and archiving
Danish registers contain information on many important health and social issues. Because
all Danish citizens have a unique personal identification number, linkage at the
individual level between these nationwide registers and other data sources is possible and
feasible. In this paper we briefly introduce selected Danish registers and the data
structure and requirements for getting access to data at Statistics Denmark, which is the
main provider of register data. We introduce the Danish Data Archive and briefly present
the Act on Processing of Personal Data, which is the legal foundation for analyses of
register-based data in Denmark.
Journal Article
For Telehealth To Succeed, Privacy And Security Risks Must Be Identified And Addressed
The success of telehealth could be undermined if serious privacy and security risks are not addressed. For example, sensors that are located in a patient's home or that interface with the patient's body to detect safety issues or medical emergencies may inadvertently transmit sensitive information about household activities. Similarly, routine data transmissions from an app or medical device, such as an insulin pump, may be shared with third-party advertisers. Without adequate security and privacy protections for underlying telehealth data and systems, providers and patients will lack trust in the use of telehealth solutions. Although some federal and state guidelines for telehealth security and privacy have been established, many gaps remain. No federal agency currently has authority to enact privacy and security requirements to cover the telehealth ecosystem. This article examines privacy risks and security threats to telehealth applications and summarizes the extent to which technical controls and federal law adequately address these risks. We argue for a comprehensive federal regulatory framework for telehealth, developed and enforced by a single federal entity, the Federal Trade Commission, to bolster trust and fully realize the benefits of telehealth. [PUBLICATION ABSTRACT]
Journal Article
