Mapping the Apps: Ethical and Legal Issues with Crowdsourced Smartphone Data using mHealth Applications
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ABSTRACT:
SUBMITTER: Farag N
PROVIDER: S-EPMC11250705 | biostudies-literature | 2024 Jun
REPOSITORIES: biostudies-literature
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Project description:ObjectiveThe inclusion of the Community Health Index in the recording of National Health Service (NHS) contacts in Scotland facilitates national linkage of data such as prescribing and healthcare utilisation. This linkage could be the basis for identification of adverse drug reactions. The aim of this article is to report the views of healthcare professionals on data sharing, ownership and the legal and other applicable frameworks relevant to linkage of routinely collected paediatric healthcare data.DesignQualitative study using semistructured face-to-face interviews addressing the study aims.ParticipantsPurposive sample of professional stakeholders (n=25) including experts on ethics, data protection, pharmacovigilance, data linkage, legal issues and prescribing. Interviews were audio-recorded, transcribed and thematically analysed using a framework approach.ResultsParticipants identified existing data sharing systems in the UK. Access to healthcare data should be approved by the data owners. The definition of data ownership and associated legal responsibilities for linked healthcare data were seen as important factors to ensure accountability for the use of linked data. Yet data owners were seen as facilitators of the proposed data linkage. Twelve frameworks (legal, regulatory and governance) applicable to the linkage of healthcare data were identified.ConclusionsA large number of potentially relevant legal and regulatory frameworks were identified. Ownership of the linked data was seen as an extension of responsibility for, or guardianship of, the source datasets. The consensus emerging from the present study was that clarity is required on the definition of data sharing, data ownership and responsibilities of data owners.
| S-EPMC3927931 | biostudies-literature
Project description:This paper focuses on the ethical challenges presented by direct-to-consumer (DTC) digital psychotherapy services that do not involve oversight by a professional mental health provider. DTC digital psychotherapy services can potentially assist in improving access to mental health care for the many people who would otherwise not have the resources or ability to connect with a therapist. However, the lack of adequate regulation in this area exacerbates concerns over how safety, privacy, accountability, and other ethical obligations to protect an individual in therapy are addressed within these services. In the traditional therapeutic relationship, there are ethical obligations that serve to protect the interests of the client and provide warnings. In contrast, in a DTC therapy app, there are no clear lines of accountability or associated ethical obligations to protect the user seeking mental health services. The types of DTC services that present ethical challenges include apps that use a digital platform to connect users to minimally trained nonprofessional counselors, as well as services that provide counseling steered by artificial intelligence and conversational agents. There is a need for adequate oversight of DTC nonprofessional psychotherapy services and additional empirical research to inform policy that will provide protection to the consumer.
| S-EPMC5938696 | biostudies-literature
Project description:BackgroundNeurological disorders are the leading cause of disability and the second leading cause of death worldwide. Teleneurology (TN) allows neurology to be applied when the doctor and patient are not present in the same place, and sometimes not at the same time. In February 2021, the Spanish Ministry of Health requested a health technology assessment report on the implementation of TN as a complement to face-to-face neurological care.MethodsA scoping review was conducted to answer the question on the ethical, legal, social, organisational, patient (ELSI) and environmental impact of TN. The assessment of these aspects was carried out by adapting the EUnetHTA Core Model 3.0 framework, the criteria established by the Spanish Network of Health Technology Assessment Agencies and the analysis criteria of the European Validate (VALues In Doing Assessments of healthcare TEchnologies) project. Key stakeholders were invited to discuss their concerns about TN in an online meeting. Subsequently, the following electronic databases were consulted from 2016 to 10 June 2021: MEDLINE and EMBASE.Results79 studies met the inclusion criteria. This scoping review includes 37 studies related to acceptability and equity, 15 studies developed during COVID and 1 study on environmental aspects. Overall, the reported results reaffirm the necessary complementarity of TN with the usual face-to-face care.ConclusionsThis need for complementarity relates to factors such as acceptability, feasibility, risk of dehumanisation and aspects related to privacy and the confidentiality of sensitive data.
| S-EPMC9962592 | biostudies-literature
Project description:Gene-environment interactions play a key role in how psychiatric disorders manifest and develop. Psychiatric genetics researchers are making progress in identifying genomic correlates of many disorders. And recently, the field of genetics has given rise to a technology that many claim will revolutionize the biological sciences and propel the field into a transformative phase: the powerful gene-editing tool known as CRISPR-Cas9. This Article illustrates which psychiatric conditions are likely to make an attractive target for CRISPR as the technology evolves and CRISPR therapies becomes a viable tool to manage or prevent disorders in a clinical setting. We examine the potential scientific and clinical challenges of applying CRISPR in the mental health context, along with the regulatory, ethical, and legal issues that might arise as a consequence of these applications.
| S-EPMC6927684 | biostudies-literature
Project description:BackgroundUnderstanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.MethodsWe examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust.ResultsThe majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies.ConclusionsMany cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.
| S-EPMC3599691 | biostudies-literature
Project description:Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.
| S-EPMC6974597 | biostudies-literature
Project description:Neuroscience research is producing big brain data which informs both advancements in neuroscience research and drives the development of advanced datasets to provide advanced medical solutions. These brain data are produced under different jurisdictions in different formats and are governed under different regulations. The governance of data has become essential and critical resulting in the development of various governance structures to ensure that the quality, availability, findability, accessibility, usability, and utility of data is maintained. Furthermore, data governance is influenced by various ethical and legal principles. However, it is still not clear what ethical and legal principles should be used as a standard or baseline when managing brain data due to varying practices and evolving concepts. Therefore, this study asks what ethical and legal principles shape the current brain data governance landscape? A systematic scoping review and thematic analysis of articles focused on biomedical, neuro and brain data governance was carried out to identify the ethical and legal principles which shape the current brain data governance landscape. The results revealed that there is currently a large variation of how the principles are presented and discussions around the terms are very multidimensional. Some of the principles are still at their infancy and are barely visible. A range of principles emerged during the thematic analysis providing a potential list of principles which can provide a more comprehensive framework for brain data governance and a conceptual expansion of neuroethics.
| S-EPMC9799320 | biostudies-literature
Project description:Symptom Checker Applications (SCA) are mobile applications often designed for the end-user to assist with symptom assessment and self-triage. SCA are meant to provide the user with easily accessible information about their own health conditions. However, SCA raise questions regarding ethical, legal, and social aspects (ELSA), for example, regarding fair access to this new technology. The aim of this scoping review is to identify the ELSA of SCA in the scientific literature. A scoping review was conducted to identify the ELSA of SCA. Ten databases (e.g., Web of Science and PubMed) were used. Studies on SCA that address ELSA, written in English or German, were included in the review. The ELSA of SCA were extracted and synthesized using qualitative content analysis. A total of 25,061 references were identified, of which 39 were included in the analysis. The identified aspects were allotted to three main categories: (1) Technology; (2) Individual Level; and (3) Healthcare system. The results show that there are controversial debates in the literature on the ethical and social challenges of SCA usage. Furthermore, the debates are characterised by a lack of a specific legal perspective and empirical data. The review provides an overview on the spectrum of ELSA regarding SCA. It offers guidance to stakeholders in the healthcare system, for example, patients, healthcare professionals, and insurance providers and could be used in future empirical research to investigate the perspectives of those affected, such as users.
| S-EPMC9613552 | biostudies-literature
Project description:BackgroundPersuasion knowledge, commonly referred to as advertising literacy, is a cognitive dimension that embraces recognition of advertising, its source and audience, and understanding of advertisers' persuasive and selling intents as well as tactics. There is little understanding of users' awareness of organizations that develop or sponsor mobile health (mHealth) apps, especially in light of personal data privacy. Persuasion knowledge or recognition of a supporting organization's presence, characteristics, competencies, intents, and persuasion tactics are crucial to investigate because app users have the right to know about entities that support apps and make informed decisions about app usage. The abundance of free consumer mHealth apps, especially those in the area of fitness, often makes it difficult for users to identify apps' dual purposes, which may be related to not only helping the public manage health but also promoting the supporting organization itself and collecting users' information for further consumer targeting by third parties.ObjectiveThis study aims to investigate smartphone users' awareness of mHealth apps' affiliations with 3 different types of supporting organizations (commercial, government, and nonprofit); differences in users' persuasion knowledge and mHealth app quality and credibility evaluations related to each of the 3 organization types; and users' coping mechanisms for dealing with personal information management within consumer mHealth apps.MethodsIn-depth semistructured interviews were conducted with 25 smartphone users from a local community in midwestern United States. Interviews were thematically analyzed using inductive and deductive approaches.ResultsParticipants indicated that their awareness of and interest in mHealth app-supporting organizations were secondary to the app's health management functions. After being probed, participants showed a high level of persuasion knowledge regarding the types of app-supporting organizations and their promotional intents. They thought that commercial companies sponsored mHealth apps mostly as entertainment tools, whereas noncommercial entities sponsored mHealth apps for users' education. They assigned self-promotional motives to commercial organizations; however, they associated commercial mHealth apps with good quality and functioning. Noncommercial entities were perceived as more credible. Participants were concerned about losing control over personal information within mHealth apps supported by different organizations. They used alternative digital identities to protect themselves from privacy invasion and advertising spam. They were willing to trade some personal information for high-quality commercial mHealth apps. There was a sense of fatalism in discussing privacy risks linked to mHealth app usage, and some participants did not perceive the risks to be serious.ConclusionsThe discussion of and recommendations for the safe and ethical use of mHealth apps associated with organizations' promotional strategies and personal data protection are provided to ensure users' awareness of and enhanced control over digitalized personal information flows. The theoretical implications are discussed in the context of the Persuasion Knowledge Model and dual-processing theories.
| S-EPMC8080138 | biostudies-literature
Project description:ObjectiveThere are more than 325,000 health-related smartphone applications (apps) on the market. To better understand the apps currently on the market for the five most disabling neuropsychiatric conditions, the authors conducted a study investigating their intended uses (target population and intervention), the data collected, and any privacy policies.MethodsThis was a cross-sectional study of apps for the five most disabling neuropsychiatric conditions per the World Health Organization: stroke, migraine, depression, Alzheimer's disease and dementia, and anxiety. Up to 15 apps in the U.S. Google Play and Apple app stores were selected based on the following prespecified inclusion criteria: the app appeared in the top 50 search results, offered intervention or tracking capabilities, and listed the condition in the app title or description. Exclusion criteria were <$5.00 to purchase, solely motor versus cognitive-based intervention, or designed for use by caregivers or health care providers. Data abstracted included function, behavior change rewards, and information about intervention, privacy policy, and payment.ResultsEighty-three apps were reviewed (stroke, N=8; migraine, N=25; Alzheimer's disease and dementia, N=8; depression, N=7; anxiety, N=14; apps targeting depression and anxiety, N=21). Sixty-nine percent of apps had an intervention component, 18% were deemed evidence based, 77% had a privacy policy, 70% required payment for access to all features, and 19% rewarded user behavior changes.ConclusionsMost apps on the market targeted migraine, depression, and anxiety and contained interventions, although most of the interventions did not appear to be evidence based. Additionally, although most apps had privacy policies, lay people may have difficulty understanding these policies due to their complexities.
| S-EPMC8670295 | biostudies-literature