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This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one's own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one's own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes.

This article explores the options for establishing a legal framework for posthumous medical data donation (PMDD). This concept has not been discussed in legal scholarship to date at all. The paper is, therefore, a first legal study of PMDD, aiming to address the gap and shed light on the most significant legal issues that could affect this concept. The paper starts by looking at the protection of the deceased's health records and medical data, finding that this protection in law is more extensive than the general protection of the deceased's personal data, or the protection of post-mortem privacy as a concept. The paper then investigates key issues around ownership and succession of personal data, including medical and health-related data, and how these could affect PMDD and its legal framework. The author then goes on to explore some parallels with organ donation to determine whether there are some lessons to be learned from this comparable regulatory framework. The paper concludes with the discussion around the need for a Code for posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute, and a more formal regime that would enable and facilitate this practice. Here, the author proposes key law reforms in the area of data protection and governance related to PMDD. These reforms would include amendments to the general data protection ideally, to ensure harmonisation and consistency across the EU, as well as between the general and sector-specific data protection laws and policies. These changes would contribute to legal and regulatory clarity and would help implement this important and valuable practice, which aims to facilitate research and advances in medical treatments and care.

With the development of new technologies and their increased applications in the context of a local government, cities have started to claim that they are smart. Smart Cities make use of Information and Communication Technologies (ICTs) to support planning and policy making. For an appropriate and sustainable functioning of these smart cities, collecting data about the different aspects of their territory and operations, including its citizens, is a crucial activity. Currently, there are two main avenues in which smart cities can collect data about their citizens: either through sensors, and cameras strategically placed throughout the city or by asking citizens to voluntarily donate to the local government their personal data (i.e., citizen engagement or 'e-participation'). Despite the growth and increasing prevalence of the latter practice, little attention has been given to how individuals experience the risks of data donation. Often, studies consider data donation as an aspect of the phenomenon of surveillance, or as a type of data sharing. This study theorises and empirically examines data donation and its risks as a phenomenon which is separate from either surveillance or data sharing. Focusing on mobility data, this study draws on two established donation and privacy risk frameworks to investigate how the risks of donating personal data to a smart city are experienced and socially constructed. The thematic analysis of ten focus groups conducted showed that, in the context of this empirical examination, privacy-specific risks alone do not constitute constructed risks. Instead, they combine in various ways with perceived donation risks to constitute more nuanced and embedded risk constructions. Donation risks are seen as potential consequences of privacy risks and combined they constitute the risks of donating data. This thesis underlines the importance of the context under which data donation takes place as well as privacy's value in a free and democratic society. ; "This work was supported by the University of St Andrews and the Social Sciences and Humanities Research Council of Canada (SSHRC) under the 'Big Data Surveillance' partnership grant. The grant's reference is: SSHRC 895-2015-1003" -- Funding

Personalized healthcare is expected to increase the efficiency and the effectiveness of health services using different kinds of algorithms on existing data. This approach is currently confronted with the lack of digital data and the desire for self-determined personal data handling. However, the issue of health data donation is on the political agenda of some governments. Within this work, a knowledge base will be created by reviewing existing approaches and technologies regarding this topic with the focus on chronic diseases. A list of requirements will be derived from which we conceptualize a data donation cycle to demonstrate the challenges and opportunities of health data sovereignty and its future possibilities concerning data-driven health application development. By linking the requirements to technological approaches, the baseline for future open ecosystems will be ...

Mobile phone usage is typically measured via self-reporting. However, scholars have questioned the validity of self-reported data, which may lead to Type I or Type II errors. Using an online survey ( n = 777), this study compared self-reported and log mobile phone usage data using a simplified version of the mobile data donation method. The results showed that people generally underreported their mobile phone usage in terms of time duration, the number of notifications, and apps used. Moreover, self-reported data may either have no additional effect on or overestimate the communication findings depending on the outcome variables. This challenges the Type II error explanation and suggests that the effect sizes of self-reported data might not be underestimated after all. Instead, past research examining mobile use and pertinent outcomes may have false-positive findings and Type I errors. Given the potential inaccuracies of self-reported data, future research on mobile media and communications should go beyond self-reported data to enhance the validity of findings.

Posthumous medical data donation (PMDD) for the purpose of legitimate, non-commercial and, potentially, very beneficial medical research has been sparsely discussed in legal scholarship to date. Conversely, quite an extensive social science and humanities research establishes benefits of this practice. It also finds that PMDD enables individuals to employ their altruistic motivations and aspirations by helping them participate in 'citizen's science' and medical research, thus supporting efforts in finding cures for some of the acutest diseases of today. There appears to be no jurisdiction where a regulatory framework supports and enables PMDD. This paper analyses whether and to what extent law and policy should enable this practice. We take a comparative approach, examining the position under both US and UK law, providing the first comparative legal account of this practice. We do not aim to suggest a detailed legal solution for PMDD, but rather key considerations and principles for legislative/policy reforms, which would support the practice of PMDD. We discuss organ donation and provide a comparative outlook with the aim of drawing lessons from this practice, and applying them to the regulation of PMDD. Our analysis is both normative and black letter since we consider arguments regarding the necessity of organ and data donation, as well as the law that regulates these practices.

With digital communication increasingly shifting to mobile devices, communication research needs to explore ways to retrieve, process, and analyze digital trace data on people's most personal devices. This study presents a new methodological approach, mobile data donations, in which smartphone usage data is collected unobtrusively with the help of mobile log data. The iOS Screen Time function is used as a test case for gathering log data with the help of screenshots. The study investigates the feasibility of the method, sample biases, and accuracy of smartphone usage self-reports on a general population sample of Dutch citizens ( n=404). Importantly, it explores how mobile data donations can be used as add-ons or substitutes for conventional media exposure measures. Results indicate that (a) users' privacy concerns and technical skills are crucial factors for the willingness to donate mobile log data and (b) there is a strong tendency for underreporting of smartphone usage duration and frequency.

Introduction & BackgroundPrevious studies have found shopping data could increase the predictive accuracy of disease surveillance systems and illuminate behavioural responses in the self-management of symptoms of disease. Yet, accessing individual sales datasets for linkage to health datasets is challenging, and the recruitment of appropriate sample sizes for medical research has been limited.
Objectives & ApproachObjectivesCollect and link individual health data to individual shopping data to investigate COVID-19. Assess the feasibility of scaling-up this method, and use the collected data to investigate using loyalty card data in machine learning (ML) models for disease.
MethodsBased on recommendations on the public's preferences for data donation a new protocol was designed for collecting, linking and analysing shopping and health data. Participants were requested to use the Tesco Clubcard website data portability function to share their loyalty card data and complete an online health survey. An exploratory data analysis was conducted on the linked dataset. Participants were recruited online (18/01/2022 to 04/02/2022) with a recruitment target of 200.
Relevance to Digital FootprintsThe collection and analysis of individual transactional sales data for health research.
Results197 participants shared their Tesco Clubcard and health survey data. Tesco Clubcard data contained 893,414 transactions of 65,310 uniquely named items purchased from 2015 to 2022. Average transactions per participant were 4,653 (SD 5256) and average timeframe recorded was five years 6 months and 30 days (SD 836 days). A total of 6,993 medication sales were recorded accounting for 1% of sales, 81% (159/197) of participants bought medications and the average was 44 (STD 68) medications per individual. Most participants (196/197) shared their health status in the survey, and 94% (81/86) of those on medication shared the medication names. Participants reported donating their data to do good (79%, 155/197), help the NHS (77%, 152/197), be socially responsible (74%, 144/197) and because data was secure and anonymised (78%, 153/197).
Conclusions & ImplicationsUsing this new protocol which enables convenient data sharing with transparent data safeguards, the public were willing to share both their shopping and health data for research into COVID-19. To apply robust ML analysis, particularly to explore self-medication at an individual level, recruitment must be significantly scaled to collect data from enough individuals with high sales and regular shopping frequency, or new ML techniques developed to address sparseness in loyalty card data of key purchasing events related to health. The study suggests public readiness to share shopping data for health research, but investment is needed for large-scale data collection and AI application.

AbstractSmartphones have become popular tools for data collection in the social sciences due to their high prevalence and mobility. Surveys, experience sampling (ESM) and tracking/logging are among the most used smartphone data-collection methods. However, existing apps are either commercial solutions, require programming skills, collect sensitive data, or do not handle all three methods simultaneously. When two or more data collection methods are used simultaneously, it further burdens both researchers and participants. This paper introduces the app MART (Mobile Assessment Research Tool) that solves these problems and is available for Android and iOS devices. Content and data collection settings can be customized dynamically via a web interface without the need to compile a new version of the app when changes are made. While the logging functionality is only supported on Android devices, data donation via the app Screen Time is requested on iOS devices. MART is already functional, and the source code is open-source and available on GitHub. The necessary long-term revisions for its use in custom projects without reprogramming are currently under development.

Abstract. The giving profile of graduate degree alumni of a Carnegie‐classified, U.S. "Doctoral Universities I" institution is investigated in this paper. For fundraising purposes, the likely gift‐giving alumni are males holding old vintage Doctoral, MBA or MS degrees; however, they neither received their second graduate degree nor earned their baccalaureate degrees at this institution. Graduate degree alumni have decreasing giving profiles for many years following completion of their first graduate degree but this decrease bottoms out later in life. It continues seven more years for alumni who earned a second graduate degree at the university. The "wealth‐accumulation" effect of giving tends to dominate the "earnings‐effect." Doctoral degree alumni have the highest giving profile among graduate school alumni. Racial desegregation of the university is positively and strongly related to alumni giving. Inferences of the giving profile of undergraduate degree alumni reported in past work do not extend to graduate school alumni.