How Indigenous communities in New Zealand are protecting their data.

Concerns about the ethical use of data, privacy, and data harms are front of mind in many jurisdictions as regulators move to impose tighter controls on data privacy and protection, and the use of artificial intelligence (AI). Although efforts to hold corporations to account for their deployment of data and data-driven technologies have been largely welcomed by academics and civil society, there is a growing recognition of the limits to individual data rights, given the capacity of tech giants to link, surveil, target, and make inferences about groups. Questions about whether collective data rights exist, and how they can be recognized and protected, have provided fertile ground for researchers but have yet to penetrate the broader discourse on data rights and regulation.

Sovereignty, sanctions, and data sharing under international law.

Pathogen samples and scientific data are bargaining chips in a global argument about who gets what in a pandemic.

CCR5 and Biological Complexity: The Need for Data Integration and Educational Materials to Address Genetic/Biological Reductionism at the Interface of Ethical, Legal, and Social Implications.

In the age of genomics, public understanding of complex scientific knowledge is critical. To combat reductionistic views, it is necessary to generate and organize educational material and data that keep pace with advances in genomics. The view that CCR5 is solely the receptor for HIV gave rise to demand to remove the gene in patients to create host HIV resistance, underestimating the broader roles and complex genetic inheritance of CCR5. A program aimed at providing research projects to undergraduates, known as CODE, has been expanded to build educational material for genes such as CCR5 in a rapid approach, exposing students and trainees to large bioinformatics databases and previous experiments for broader data to challenge commitment to biological reductionism. Our students organize expression databases, query environmental responses, assess genetic factors, generate protein models/dynamics, and profile evolutionary insights into a protein such as CCR5. The knowledgebase generated in the initiative opens the door for public educational information and tools (molecular videos, 3D printed models, and handouts), classroom materials, and strategy for future genetic ideas that can be distributed in formal, semiformal, and informal educational environments. This work highlights that many factors are missing from the reductionist view of CCR5, including the role of missense variants or expression of CCR5 with neurological phenotypes and the role of CCR5 and the delta32 variant in complex critical care patients with sepsis. When connected to genomic stories in the news, these tools offer critically needed Ethical, Legal, and Social Implication (ELSI) education to combat biological reductionism.

A Literature Review on the GDPR, COVID-19 and the Ethical Considerations of Data Protection During a Time of Crisis.

OBJECTIVE: This survey article presents a literature review of relevant publications aiming to explore whether the EU's General Data Protection Regulation (GDPR) has held true during a time of crisis and the implications that arose during the COVID-19 outbreak. METHOD AND RESULTS: Based on the approach taken and the screening of the relevant articles, the results focus on three themes: a critique on GDPR; the ethics surrounding the use of digital health technologies, namely in the form of mobile applications; and the possibility of cross border transfers of said data outside of Europe. Within this context, the article reviews the arising themes, considers the use of data through mobile health applications, and discusses whether data protection may require a revision when balancing societal and personal interests. CONCLUSIONS: In summary, although it is clear that the GDPR has been applied through a mixed and complex experience with data handling during the pandemic, the COVID-19 pandemic has indeed shown that it was a test the GDPR was designed and prepared to undertake. The article suggests that further review and research is needed to first ensure that an understanding of the state of the art in data protection during the pandemic is maintained and second to subsequently explore and carefully create a specific framework for the ethical considerations involved. The paper echoes the literature reviewed and calls for the creation of a unified and harmonised network or database to enable the secure data sharing across borders.

International transfers of personal data for health research following Schrems II: a problem in need of a solution.

On 16 July 2020, the Court of Justice of the European Union issued their decision in the Schrems II case concerning Facebook's transfers of personal data from the EU to the US. The decision may have significant effects on the legitimate transfer of personal data for health research purposes from the EU. This article aims: (i) to outline the consequences of the Schrems II decision for the sharing of personal data for health research between the EU and third countries, particularly in the context of the COVID-19 pandemic; and, (ii) to consider certain options available to address the consequences of the decision and to facilitate international data exchange for health research moving forward.

Performance Changes Following the Revision of Organ Allocation System of Lung Transplant: Analysis of Korean Network for Organ Sharing Data.

BACKGROUND: There is currently a lack of data on the impact of the recent revision of the domestic lung allocation system on transplant performance. METHODS: We conducted a retrospective analysis of transplant candidates and transplant patients registered in Korean Network for Organ Sharing between July 2015 and July 2019. Study periods were classified according to the introduction of the revised lung allocation system as follows: period 1 from July 2015 to June 2017 and period 2 from August 2017 to July 2019. RESULTS: During the study period, a total of 627 patients were on the waiting list, of which 398 lung transplantations were performed. Total waiting list size increased by 98.6%, from 210 in period 1 to 417 in period 2. The number of transplant patients also increased by 32.7%, from 171 in period 1 to 227 in period 2. The number of donors decreased from 1,042 to 878, whereas the usage rate, i.e., the number of lung donors used for transplantation among the total number of reported lung donors, increased from 16.4% to 25.9%. The proportion of patients with high urgent status at transplantation increased from 45% to 60.4%, whereas those with urgent status decreased from 46.8% to 35.7% (P = 0.006). The use of marginal donor lungs increased from 29.8% to 53.7% (P < 0.001). To adjust urgency status and marginal donor usage between two groups, we conducted a propensity score matching analysis. No significant differences were detected in 1-year survival rates between the two periods after propensity score matching. As well, no significant difference was observed in mortality on the waiting list between the two periods. CONCLUSION: The recent revision of the lung allocation system in Korea did not change the performance of lung transplant in terms of waiting list mortality and 1-year survival. The rapid increase in the volume of waiting list between the two periods increased the waiting time, transplantation of high-urgency patients, and use of marginal lung donors.