BackgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper presents the results of a citizen forum that included 73 participants. A research tool titled "the (...) mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.ResultsThe results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants.DiscussionChoice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics. (shrink)

Continued confinement of those most vulnerable to COVID-19—e.g., the elderly, those with chronic diseases and other risk factors—is presented as an uncontroversial measure when planning exit strategies from lockdown measures. Policies for deconfinement assume that these persons will remain confined even when others will not. This, however, could last quite a long time, and for some this could mean that they will remain in confinement for the rest of their lives.In a policy brief on ethical, legal, and social issues of (...) transition strategies, the Swiss national COVID-19 science task force stated that:Specific interventions should target the risks associated with isolation... (shrink)

Objective Routine prenatal screening for Down syndrome challenges professional non-directiveness and patient autonomy in daily clinical practices. This paper aims to describe how professionals negotiate their role when a pregnant woman asks them to become involved in the decision-making process implied by screening.Methods Forty-one semi-structured interviews were conducted with gynaecologists–obstetricians and midwives in a large Swiss city.Results Three professional profiles were constructed along a continuum that defines the relative distance or proximity towards patients’ demands for professional involvement in the decision-making (...) process. The first profile insists on enforcing patient responsibility, wherein the healthcare provider avoids any form of professional participation. A second profile defends the idea of a shared decision making between patients and professionals. The third highlights the intervening factors that justify professionals’ involvement in decisions.Conclusions These results illustrate various applications of the principle of autonomy and highlight the complexity of the doctor–patient relationship amidst medical decisions today. (shrink)