Teaching ethics in public health programmes is not routine everywhere – at least not in most schools of public health in the European region. Yet empirical evidence shows that schools of public health are more and more interested in the integration of ethics in their curricula, since public health professionals often have to face difficult ethical decisions.

As donor trust legitimises research, trust is vital for research in the fields of biomedicine, genetics, translational medicine and personalised medicine. For parts of the donor community, the consent signature is a sign of trust in research. Many consent processes in biomedical research ask donors to provide their data for an unspecified future use, which introduces uncertainty of the unknown. This uncertainty can jeopardise donor trust or demand blind trust. But which donor wants to trust blindly? To reduce this uncertainty, (...) we explore first, which future-proof actors donors could trust when signing a consent form. Second, we discuss the question Can we know if donor trust expires? and what prevents donor trust from expiring. Finally, we present possible measures that can help to nurture trust in the far future. In this article, we draw on our previous research on trust in biomedical research, on trust in the broader healthcare system and Niklas Luhmann’s and Anthony Giddens’ trust theories. Our findings suggest that, in the far future, researchers will need to consider donor autonomy, as well as societal norms and values of the time period in which the data were donated. They will need to find mechanisms where possible to publicly announce the use of old data sets. However, foremost researchers will need to treat the data respectfully. It remains vital that professionals and the society continue to elaborate on the norms and values that shape the common understanding of what is morally right and wrong when researching data. (shrink)

Die öffentliche Diskussion um die „personalisierte Medizin“ legt nahe, dass mit diesem medizinischen Ansatz hohe Erwartungen an einen Beitrag zur klinischen Versorgung verbunden werden. Über die Wahrnehmungen und Bewertungen klinisch tätiger Ärzte ist jedoch wenig bekannt. Die vorliegende qualitative Interviewstudie gibt einen Einblick bezüglich des Einflusses „personalisierter Medizin“ auf die klinische Praxis aus ärztlicher Perspektive. Die Ärzte im vorliegenden Sample nehmen „personalisierte Medizin“ zwar als einen medizinischen Fortschritt wahr, sehen allerdings keine grundsätzliche Veränderung der bisherigen medizinischen Praxis. Als zentrales Problem (...) wird die Handhabung und Verwertung von molekulargenetischen Informationen für Diagnose und Therapie in der klinischen Praxis thematisiert. In Anbetracht der Ergebnisse muss infrage gestellt werden, ob „personalisierte Medizin“ nicht das Gegenteil von dem, was ihr Name nahe legt – eine personenorientiertere Medizin – bewirkt. Die Strategien im Umgang mit den Informationsmassen produzieren selbst neue Herausforderungen, die ein Hindernis für eine personenorientierte Medizin darstellen könnten. (shrink)

ZusammenfassungDie öffentliche Diskussion um die „personalisierte Medizin“ legt nahe, dass mit diesem medizinischen Ansatz hohe Erwartungen an einen Beitrag zur klinischen Versorgung verbunden werden. Über die Wahrnehmungen und Bewertungen klinisch tätiger Ärzte ist jedoch wenig bekannt. Die vorliegende qualitative Interviewstudie gibt einen Einblick bezüglich des Einflusses „personalisierter Medizin“ auf die klinische Praxis aus ärztlicher Perspektive. Die Ärzte im vorliegenden Sample nehmen „personalisierte Medizin“ zwar als einen medizinischen Fortschritt wahr, sehen allerdings keine grundsätzliche Veränderung der bisherigen medizinischen Praxis. Als zentrales Problem (...) wird die Handhabung und Verwertung von molekulargenetischen Informationen für Diagnose und Therapie in der klinischen Praxis thematisiert. In Anbetracht der Ergebnisse muss infrage gestellt werden, ob „personalisierte Medizin“ nicht das Gegenteil von dem, was ihr Name nahe legt – eine personenorientiertere Medizin – bewirkt. Die Strategien im Umgang mit den Informationsmassen produzieren selbst neue Herausforderungen, die ein Hindernis für eine personenorientierte Medizin darstellen könnten. (shrink)

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. (shrink)

Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to (...) trust these activities with their personal data. An analysis of online news readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data. (shrink)