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Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy-in turn raising an important problem in business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network's ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue., Journal of Business Ethics, ISSN:0167-4544, ISSN:1573-0697

Objectives This article aims to measure the willingness of the Swiss public to participate in personalised health research, and their preferences regarding data management and governance. Setting Results are presented from a nationwide survey of members of the Swiss public. Participants 15 106 randomly selected Swiss residents received the survey in September 2019. The response rate was 34.1% (n=5156). Respondent age ranged from 18 to 79 years, with fairly uniform spread across sex and age categories between 25 and 64 years. Primary and secondary outcome measures Willingness to participate in personalised health research and opinions regarding data management and governance. Results Most respondents preferred to be contacted and reconsented for each new project using their data (39%, 95% CI: 37.4% to 40.7%), or stated that their preference depends on the project type (29.4%, 95% CI: 27.9% to 31%). Additionally, a majority (52%, 95% CI: 50.3% to 53.8%) preferred their data or samples be stored anonymously or in coded form (43.4%, 95% CI: 41.7% to 45.1%). Of those who preferred that their data be anonymised, most also indicated a wish to be recontacted for each new project (36.8%, 95% CI: 34.5% to 39.2%); however, these preferences are in conflict. Most respondents desired to personally own their data. Finally, most Swiss respondents trust their doctors, along with researchers at universities, to protect their data. Conclusion Insight into public preference can enable Swiss biobanks and research institutions to create management and governance strategies that match the expectations and preferences of potential participants. Models allowing participants to choose how to interact with the process, while more complex, may increase individual willingness to provide data to biobanks., BMJ Open, 12 (8), ISSN:2044-6055

PLoS ONE, 13 (10), ISSN:1932-6203

In the wake of the pandemic of coronavirus disease 2019 (COVID-19), contact tracing has become a key element of strategies to control the spread of severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). Given the rapid and intense spread of SARS-CoV-2, digital contact tracing has emerged as a potential complementary tool to support containment and mitigation efforts. Early modelling studies highlighted the potential of digital contact tracing to break transmission chains, and Google and Apple subsequently developed the Exposure Notification (EN) framework, making it available to the vast majority of smartphones. A growing number of governments have launched or announced EN-based contact tracing apps, but their effectiveness remains unknown. Here, we report early findings of the digital contact tracing app deployment in Switzerland. We demonstrate proof-of-principle that digital contact tracing reaches exposed contacts, who then test positive for SARS-CoV-2. This indicates that digital contact tracing is an effective complementary tool for controlling the spread of SARS-CoV-2. Continued technical improvement and international compatibility can further increase the efficacy, particularly also across country borders.

Objectives To explore attitudes of Swiss older adults towards personal genomics (PG). Methods Using an anonymized voluntary paper-and-pencil survey, data were collected from 151 men and women aged 60–89 years attending the Seniorenuniversität Zurich, Switzerland (Seniors' University). Analyses were conducted using descriptive and inferential statistics. Results One third of the respondents were aware of PG, and more than half indicated interest in undergoing PG testing. The primary motivation provided was respondents' interest in finding out about their own disease risk, followed by willingness to contribute to scientific research. Forty-four percent were not interested in undergoing testing because results might be worrisome, or due to concerns about the validity of the results. Only a minority of respondents mentioned privacy-related concerns. Further, 66% were interested in undergoing clinic-based PG motivated by the opportunity to contribute to scientific research (78%) and 75% of all study participants indicated strong preferences to donate genomic data to public research institutions. Conclusion This study indicates a relatively positive overall attitude towards personal genomic testing among older Swiss adults, a group not typically represented in surveys about personal genomics. Genomic data of older adults can be highly relevant to late life health and maintenance of quality of life. In addition they can be an invaluable source for better understanding of longevity, health and disease. Understanding the attitudes of this population towards genomic analyses, although important, remains under-examined., Applied and Translational Genomics, 8, ISSN:2212-0661

The flourishing of citizen science is an exciting phenomenon with the potential to contribute significantly to scientific progress. However, we lack a framework for addressing in a principled and effective manner the pressing ethical questions it raises. We argue that at the core of any such framework must be the human right to science. Moreover, we stress an almost entirely neglected dimension of this right—the entitlement it confers on all human beings to participate in the scientific process in all of its aspects. We then explore three of its key implications for the ethical regulation of citizen science: (a) the positive obligations imposed by the right on the state and other agents to recognize and promote citizen science, (b) the convective nature of the participation in science facilitated by the right and (c) the potential to mobilize the right in rolling back the unprecedented expansion of intellectual property regimes., Philosophy & Technology, 28 (3), ISSN:2210-5433, ISSN:2210-5441

In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish.

In this paper, we address the complex relationship between big data and human rights. Because this is a vast terrain, we restrict our focus in two main ways. First, we concentrate on big data applications in scientific research, mostly health-related research. And, second, we concentrate on two human rights: the familiar right to privacy and the less well-known right to science. Our contention is that human rights interact in potentially complex ways with big data, not only constraining it, but also enabling it in various ways; and that such rights are dynamic in character, rather than fixed once and for all, changing in their implications over time in line with changes in the context we inhabit, and also as they interact among themselves in jointly responding to the opportunities and risks thrown up by a changing world. Understanding this dynamic interaction of human rights is crucial for formulating an ethic tailored to the realities—the new capabilities and risks—of the rapidly evolving digital environment. This article is part of the themed issue ‘The ethical impact of data science’.

Health-related research is increasingly drawing on novel sources of online data, such as crowdsourced information about disease outbreaks, consumer-supplied information provided to health or wellness Web sites, Internet search queries about personal health, and social network postings that identify health behaviors. We offer examples of online sources and their uses, identify ethical and policy issues they generate, and formulate key questions for future discussion and investigation. Further work in this area will require cross-disciplinary collaboration to develop ethics and policy guidance for the ethical use of these novel data sources in health-related research.

With the prospect of genomic data becoming ever more easily available, Effy Vayena and Urs Gasser discuss how we could balance making the most of its benefits with reducing its risks to privacy.

Die Debatte um die personalisierte Genomik und deren Rolle in der personalisierten Medizin wurde gewissermassen entfremdet zur Diskussion um die kommerziell erhältlichen Gentests, die der Konsument direkt nach Hause bestellen kann. Die klinische Aussagekraft und Nützlichkeit dieser Tests ist umstritten, weshalb die meisten Richtlinien zur DTC-Genomik davon abraten. Andererseits sehen Befürworter, insbesondere die DTC-Industrie, einen persönlichen Nutzen im Erlangen genomischer Information. Es ist wichtig, Risiken und Nutzen von DTC-Gentests zu diskutieren. Dabei sollten wir aber nicht aus den Augen verlieren, welche Bedeutung die Genomik in der medizinischen Praxis und im Gesundheitswesen gewinnt. Durch den Einsatz von genomischen Informationen stehen uns wichtige Veränderungen bevor, weshalb wir auf deren mögliche Auswirkungen, wie genetische Diskriminierung, Schutz der Privatsphäre und Chancengleichheit im Gesundheitswesen, konzentrieren sollten. Die personalisierte Genomik wird ohne Zweifel nicht nur unsere Medizin, sondern vor allem auch unsere sozialen Normen herausfordern. Es geht dabei um mehr als die Frage «DTC Genomik ja oder nein», und darauf sollte die Debatte fokussieren.

Public health genomics, 17 (3), ISSN:1662-4246, ISSN:1662-8063

but that has received inadequate attention in clinical medicine. They set out a bold, new vision of how to handle genetic infor-mation. However, they have attracted a critical backlash, largely because they deny patients undergoing sequencing a choice as to whether or not to receive a minimum list of incidental findings. Moreover, the ACMG recommendations were pre-sented, and have been widely perceived, as generating a con-flict between the values of patient autonomy and beneficence. Naturally, any proposed sacrifice of patient autonomy merits serious debate.The major criticism brought against the recommendations is that they unacceptably override patients’ consent, and hence their autonomy, which is the chief value protected by informed consent procedures. On this view, patients are wrongly denied the choice of an analysis confined to the “target” genes, and their “right not to know” is violated when they are informed by the clinician of any incidental findings. This departure from the established informed consent regime has been condemned as a disconcerting throwback to the era of medical paternalism.

As participant-led health research increases, Effy Vayena and and John Tasioulas examine what ethical questions are raised, and what types of standards need to be developed for appropriate ethical oversight for participant-led research projects.

Personal health data supplied by users of mobile devices, health apps, and the social Web and data from tracking of consumers’ online behavior — coupled with advanced bioinformatics tools — offer opportunities for use in health research. A central ethical question is whether individuals who have provided personal information online in nonresearch contexts have consented to research uses. Here, we explore this issue of informed consent, discuss some limitations of current practices, and offer recommendations for improving consent practices through a more tailored, context-sensitive approach that makes use of the dynamism of the Web-based context. Our proposals are rooted in the ethical imperative of protecting individual rights and respecting autonomy while enabling a dynamic research environment for the advancement of clinical medicine and public health.

Aims: This study explores attitudes, motivations and self-reported impact in connection with direct-to-consumer (DTC) genomic testing amongst a group of life scientists in Switzerland. Methods: Data were collected through: (1) a self-completion online questionnaire, and (2) semi-structured qualitative interviews. Forty participants completed the questionnaire and 10 were interviewed. Results: Curiosity was mentioned as the primary reason for undergoing testing, while less significance was attributed to receiving actionable health information. The opportunity to contribute to research ranked high as a motive for testing. Overall, participants assessed their experience with the test as positive and were willing to recommend it to others. Some reported that the testing had an impact on how they view their health, but only a third of participants planned on showing the results to health practitioners. Participants consistently referred to ‘fun’ when describing several aspects of the testing experience. The ‘fun factor’ manifested itself in different phases of the process, including the motivation for taking the test, receiving the information and putting the test results to use (including sharing and discussing it with others). This finding suggests the need to further explore the concept of personal utility in DTC genomics. Conclusions: Although this group is not representative of the broader population due to both their scientific expertise and their willingness to try out a controversial new technology, their experiences provide valuable insights into the role of personal curiosity and altruism (fostering medical research) as motivations for testing and the utility attributed to both.

Note: Editorial Reference EPFL-ARTICLE-214482doi:10.1371/journal.pcbi.1003904 Record created on 2015-12-10, modified on 2017-05-12