Heterodox underdetermination: Metaphysical options for discernibility and (non-)entanglement.

Broadly speaking, there are three views on whether Leibniz's Principle of the Identity of Indiscernibles (PII) is violated in the case of similar particles. According to the earliest view, PII is always violated (call this the no discernibility view); according to the more recent weak discernibility view, PII is at least valid in a weak sense. No and weak discernibility have been referred to as orthodoxy. Steven French has argued that although PII is violated, similar particles can still be regarded as individuals, or, alternatively, as non-individuals: French famously concluded therefore that metaphysics is underdetermined by physics. Call this thesis orthodox underdetermination. Most recently, some authors have turned against orthodoxy by arguing that PII is valid in more than a weak sense - call this the new discernibility view, also referred to as heterodoxy. Since heterodoxy is backed up by physical considerations, metaphysics now seems to be determined by physics: physics indicates that PII is valid. In this paper, I argue that with respect to entangled states, there are two ways to establish PII's validity, which yield two different ontological interpretations of entanglement. Therefore, a form of underdetermination returns within the heterodox framework. I argue that heterodox underdetermination deserves some attention, because the two ontological interpretations might yield different explanations of the violation of Bell inequalities.

Recent Amendments to the Australian Privacy Act.

The recently passed Privacy Legislation Amendment (Enforcement and Other Measures) Act 2022 (Cth) introduced important changes to the Australian Privacy Act 1988 (Cth) which increase penalties for serious and repeated interferences with privacy and strengthen the investigative and enforcement powers of the Information Commissioner. The amendments were made subsequent to a number of high profile data breaches and represent the first set of changes to the Privacy Act following the review of the Act commenced by the Attorney-General in October 2020. The submissions made to the review emphasized the need for more effective enforcement mechanisms to increase individuals' control over their personal information and as a form of deterrence. This article reviews the recent amendments to the Privacy Act and explains their effect. It comments upon the relevance of the amendments for health and medical data and other data collected in the context of healthcare, and refers to the Attorney-General's Department's review of the Privacy Act regarding other proposals relating to enforcement which have not as yet been put into effect in legislation.

Preserving Privacy when Querying OMOP CDM Databases.

Anonymisation is currently one of the biggest challenges when sharing sensitive personal information. Its importance depends largely on the application domain, but when dealing with health information, this becomes a more serious issue. A simpler approach to avoid inadequate disclosure is to ensure that all data that can be associated directly with an individual is removed from the original dataset. However, some studies have shown that simple anonymisation procedures can sometimes be reverted using specific patients' characteristics. In this work, we propose a secure architecture to share information from distributed databases without compromising the subjects' privacy. The anonymiser system was validated using the OMOP CDM data schema, which is widely adopted in observational research studies.

New Meanings in the Archive: Privacy, Technological Change and the Status of Sources.

This essay reflects on how technological changes in biomedicine can affect what archival sources are available for historical research. Historians and anthropologists have examined the ways in which old biomedical samples can be made to serve novel scientific purposes, such as when decades-old frozen tissue specimens are analyzed using new genomic techniques. Those uses are also affected by shifting ethical regimes, which affect who can do what with old samples, or whether anything can be done with them at all. Archival collections are subject to similar dynamics, as institutional change and shifts in ethical guidelines and privacy laws affect which sources can be accessed and which are closed. I witnessed just such a change during my research into human genetics using archives in the Wellcome Collection. A few years into my project, those archives had their privacy conditions reassessed, and I saw how some sources previously seen as neutral were now understood to contain personal sensitive information. This paper describes the conditions of this shift-including the effects of technological change, new ethical considerations, and changing laws around privacy. I reflect on how these affected my understanding of the history of human genetics, and how I and others might narrate it.

The surprising power of a click requirement: How click requirements and warnings affect users' willingness to disclose personal information.

What kinds of information and alerts might cause internet users to be more cautious about what they reveal online? We used a 25-item survey to determine whether the strength of Terms of Service (TOS) warnings and the inclusion of a click requirement affect people's willingness to admit to engaging in inappropriate behaviors. A racially and ethnically diverse group of 1,500 people participated in the study; 98.3% were from the US and India and the remainder from 18 other countries. Participants were randomly assigned to five different groups in which warnings and click requirements varied. In the control condition, no warning was provided. In the four experimental groups, two factors were varied in a 2 × 2 factorial design: strength of warning and click requirement. We found that strong warnings were more effective than weak warnings in decreasing personal disclosures and that click requirements added to the deterrent power of both strong and weak warnings. We also found that a commonly used TOS warning has no impact on disclosures. Participants in the control group provided 32.8% more information than participants in the two click requirement groups combined and 24.3% more information than participants in the four experimental groups combined. The pattern according to which people dropped out of the five different groups sheds further light on the surprising power of the click requirement, as well as on the importance of tracking attrition in online studies.

The Disclosure of Personally Identifiable Information in Studies of Neighborhood Contexts and Patient Outcomes.

Clinical epidemiology and patient-oriented health care research that incorporates neighborhood-level data is becoming increasingly common. A key step in conducting this research is converting patient address data to longitude and latitude data, a process known as geocoding. Several commonly used approaches to geocoding (eg, ggmap or the tidygeocoder R package) send patient addresses over the internet to web-based third-party geocoding services. Here, we describe how these approaches to geocoding disclose patients' personally identifiable information (PII) and how the subsequent publication of the research findings discloses the same patients' protected health information (PHI). We explain how these disclosures can occur and recommend strategies to maintain patient privacy when studying neighborhood effects on patient outcomes.

Data protection, data management, and data sharing: Stakeholder perspectives on the protection of personal health information in South Africa.

The Protection of Personal Information Act (POPIA) 2013 came into force in South Africa on 1 July 2020. It seeks to strengthen the processing of personal information, including health information. While POPIA is to be welcomed, there are concerns about the impact it will have on the processing of health information. To ensure that the National Health Laboratory Service [NHLS] is compliant with these new strict processing requirements and that compliance does not negatively impact upon its current screening, treatment, surveillance and research mandate, it was decided to consider the development of a NHLS POPIA Code of Conduct for Personal Health. As part of the process of developing such a Code and better understand the challenges faced in the processing of personal health information in South Africa, 19 semi-structured interviews with stakeholders were conducted between June and September 2020. Overall, respondents welcomed the introduction of POPIA. However, they felt that there are tensions between the strengthening of data protection and the use of personal information for individual patient care, treatment programmes, and research. Respondents reported a need to rethink the management of personal health information in South Africa and identified 5 issues needing to be addressed at a national and an institutional level: an understanding of the importance of personal information; an understanding of POPIA and data protection; improve data quality; improve transparency in data use; and improve accountability in data use. The application of POPIA to the processing of personal health information is challenging, complex, and likely costly. However, personal health information must be appropriately managed to ensure the privacy of the data subject is protected, but equally that it is used as a resource in the individual's and wider public interest.

Privacy nudges for disclosure of personal information: A systematic literature review and meta-analysis.

OBJECTIVE: Digital nudging has been mooted as a tool to alter user privacy behavior. However, empirical studies on digital nudging have yielded divergent results: while some studies found nudging to be highly effective, other studies found no such effects. Furthermore, previous studies employed a wide range of digital nudges, making it difficult to discern the effectiveness of digital nudging. To address these issues, we performed a systematic review of empirical studies on digital nudging and information disclosure as a specific privacy behavior. METHOD: The search was conducted in five digital libraries and databases: Scopus, Google Scholar, ACM Digital Library, Web of Science, and Science Direct for peer-reviewed papers published in English after 2006, examining the effects of various nudging strategies on disclosure of personal information online. RESULTS: The review unveiled 78 papers that employed four categories of nudge interventions: presentation, information, defaults, and incentives, either individually or in combination. A meta-analysis on a subset of papers with available data (n = 54) revealed a significant small-to-medium sized effect of the nudge interventions on disclosure (Hedges' g = 0.32). There was significant variation in the effectiveness of nudging (I2 = 89%), which was partially accounted for by interventions to increase disclosure being more effective than interventions to reduce disclosure. No evidence was found for differences in the effectiveness of nudging with presentation, information, defaults, and incentives interventions. CONCLUSION: Identifying ways to nudge users into making more informed and desirable privacy decisions is of significant practical and policy value. There is a growing interest in digital privacy nudges for disclosure of personal information, with most empirical papers focusing on nudging with presentation. Further research is needed to elucidate the relative effectiveness of different intervention strategies and how nudges can confound one another.

Plasma Proteomes Can Be Reidentifiable and Potentially Contain Personally Sensitive and Incidental Findings.

The goal of clinical proteomics is to identify, quantify, and characterize proteins in body fluids or tissue to assist diagnosis, prognosis, and treatment of patients. In this way, it is similar to more mature omics technologies, such as genomics, that are increasingly applied in biomedicine. We argue that, similar to those fields, proteomics also faces ethical issues related to the kinds of information that is inherently obtained through sample measurement, although their acquisition was not the primary purpose. Specifically, we demonstrate the potential to identify individuals both by their characteristic, individual-specific protein levels and by variant peptides reporting on coding single nucleotide polymorphisms. Furthermore, it is in the nature of blood plasma proteomics profiling that it broadly reports on the health status of an individual-beyond the disease under investigation. Finally, we show that private and potentially sensitive information, such as ethnicity and pregnancy status, can increasingly be derived from proteomics data. Although this is potentially valuable not only to the individual, but also for biomedical research, it raises ethical questions similar to the incidental findings obtained through other omics technologies. We here introduce the necessity of-and argue for the desirability for-ethical and human-rights-related issues to be discussed within the proteomics community. Those thoughts are more fully developed in our accompanying manuscript. Appreciation and discussion of ethical aspects of proteomic research will allow for deeper, better-informed, more diverse, and, most importantly, wiser guidelines for clinical proteomics.

Do You Know Who Is Talking to Your Wearable Smartband?

We study seven fitness trackers and their associated smartphone apps from a wide variety of manufacturers, and record who they are talking to. Our results suggest that some of them communicate with unexpected third parties, including social networks, advertisement websites, weather services, and various external APIs. This implies that such unanticipated third-parties may glean personal information of users.

Disentangled Adversarial Transfer Learning for Physiological Biosignals.

Recent developments in wearable sensors demonstrate promising results for monitoring physiological status in effective and comfortable ways. One major challenge of physiological status assessment is the problem of transfer learning caused by the domain inconsistency of biosignals across users or different recording sessions from the same user. We propose an adversarial inference approach for transfer learning to extract disentangled nuisance-robust representations from physiological biosignal data in stress status level assessment. We exploit the trade-off between task-related features and person-discriminative information by using both an adversary network and a nuisance network to jointly manipulate and disentangle the learned latent representations by the encoder, which are then input to a discriminative classifier. Results on cross-subjects transfer evaluations demonstrate the benefits of the proposed adversarial framework, and thus show its capabilities to adapt to a broader range of subjects. Finally we highlight that our proposed adversarial transfer learning approach is also applicable to other deep feature learning frameworks.

Representation and Interpretation of Genetic Analysis: A Strategy of Development for the Personal Genetics Card Information System.

In this paper, we describe a strategy for the development of a genetic analysis comprehensive representation. The primary intention is to ensure the available utilization of genetic analysis results in clinical practice. The system is called Personnel Genetic Card (PGC), and it is developed in cooperation of CIIRC CTU in Prague and the Mediware company. Nowadays, genetic information is more and more part of medicine and life quality services (e.g. nutritional consulting). Therefore, there is necessary to bind genetic information with the clinical phenotype, such as drug metabolism or intolerance to various substances. We proposed a structured form of the record, where we utilize the LOINC® standard to identify genetic test parameters, and several terminology databases for representing specific genetic information (e.g. HGNC, NCBI RefSeq, NCBI dbNSP, HGVS). Further, there are also several knowledge databases (PharmGKB, SNPedia, ClinVar) that collect interpretation for genetic analysis results. In the results of this paper, we describe our idea in the structure and process perspective. The structural perspective includes the representation of the analysis record and its binding with the interpretations. The process perspective describes roles and activities within the PGC system use.

Providing personal information to the benefit of others.

Personal information is a precious resource, not only for commercial interests but also for the public benefit. Reporting personal location data, for example, may aid efficient traffic flows and sharing one's health status may be a crucial instrument of disease management. We experimentally study individuals' willingness to contribute personal information to information-based public goods. Our data provide evidence that-compared to monetary contributions to public goods-information may be substantially under-provided. We show that the degree of information provision is strongly correlated to the information's implicit (emotional and cognitive) costs. Individual's reluctance to share personal information with high implicit, in particular emotional costs, may seriously limit the effectiveness of information-based public goods.

To What Extent Does the EU General Data Protection Regulation (GDPR) Apply to Citizen Scientist-Led Health Research with Mobile Devices?

In this article, we consider the possible application of the European General Data Protection Regulation (GDPR) to "citizen scientist"-led health research with mobile devices. We argue that the GDPR likely does cover this activity, depending on the specific context and the territorial scope. Remaining open questions that result from our analysis lead us to call for lex specialis that would provide greater clarity and certainty regarding the processing of health data by for research purposes, including these non-traditional researchers.

Diminishing personal information privacy weakens image concerns.

The popularity of social media has increased users' social visibility. However, users' limited ability to control information spread could compromise privacy. People care about how others perceive them. We examined people's concerns for others' evaluations on their behaviors under different degrees of privacy conditions. Using a variant of the dictator game, we induced dictators to self-select into pro-self or pro-social types and asked recipients to give written evaluations of the dictators. We varied the degree of personal information privacy by making the written content known to the corresponding dictators only, all dictators, or either of them with equal chance. Also, the dictators could avoid receiving the message at a price. We showed that pro-self dictators' willingness to pay to conceal messages decreased when information privacy diminished. Thus, results indicated that image concerns wane in an environment where information privacy is weak. Our results contribute to understanding of the privacy paradox.

Pigmented Purpuric Dermatosis: A Review of the Literature. / Dermatosis purpúricas pigmentadas. Revisión de la literatura científica.

The pigmented purpuric dermatoses are a group of benign, chronic diseases. The variants described to date represent different clinical presentations of the same entity, all having similar histopathologic characteristics. We provide an overview of the most common PPDs and describe their clinical, dermatopathologic, and epiluminescence features. PPDs are both rare and benign, and this, together with an as yet poor understanding of the pathogenic mechanisms involved, means that no standardized treatments exist. We review the treatments described to date. However, because most of the descriptions are based on isolated cases or small series, there is insufficient evidence to support the use of any of these treatments as first-line therapy.

Hacking HIPAA: "Best Practices" for Avoiding Oversight in the Sale of Your Identifiable Medical Information.

In light of the confusion invited by applying the label "de-identified" to information that can be used to identify patients, it is paramount that regulators, compliance professionals, patient advocates and the general public understand the significant differences between the standards applied by HIPAA and those applied by permissive "de-identification guidelines." This Article discusses those differences in detail. The discussion proceeds in four Parts. Part II (HIPAA's Heartbeat: Why HIPAA Protects Identifiable Patient Information) examines Congress's motivations for defining individually identifiable health information broadly, which included to stop the harms patients endured prior to 1996 arising from the commercial sale of their medical records. Part III (Taking the "I" Out of Identifiable Information: HIPAA's Requirements for De-Identified Health Information) discusses HIPAA's requirements for de-identification that were never intended to create a loophole for identifiable patient information to escape HIPAA's protections. Part IV (Anatomy of a Hack: Methods for Labeling Identifiable information "De-Identified") examines the goals, methods, and results of permissive "de-identification guidelines" and compares them to HIPAA's requirements. Part V (Protecting Un-Protected Health Information) evaluates the suitability of permissive "de-identification guidelines," concluding that the vulnerabilities inherent in their current articulation render them ineffective as a data protection standard. It also discusses ways in which compliance professionals, regulators, and advocates can foster accountability and transparency in the utilization of health information that can be used to identify patients.