Patient data and patient rights: Swiss healthcare stakeholders' ethical awareness regarding large patient data sets - a qualitative study.

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.

Does organ selling violate human dignity?

Shortages in the number of donated organs after death and the growing number of end-stage organ failure patients on waiting lists call for looking at alternatives to increase the number of organs that could be used for transplantation purposes. One option that has led to a legal and ethical debate is to have regulated markets in human organs. Opponents of a market in human organs offer different arguments that are mostly founded on contingent factors that can be adjusted. However, some authors have asked the question whether we still have a reason to believe that there is something wrong with offering human organs for sale for transplantation purposes, even if the circumstances under which the practice takes place are improved. One prominent argument regarding this appeals to the notion of human dignity. It is argued that organ selling violates human dignity. This paper presents a systematic discussion of dignity-based arguments in the organ selling debate, and then develops a social account of dignity. It is argued that allowing the practice of organ selling inherently runs the risk of promoting the notion that some persons have less worth than others and that persons have a price, which is incompatible with dignity. The approach is defended against possible objections and it is shown that it can capture the notion that autonomy is linked to human dignity in important ways, while dignity at the same time can constrain the autonomous choices of persons with regards to certain practices.

Evaluating human enhancements: the importance of ideals.

Is it necessary to have an ideal of perfection in mind to identify and evaluate true biotechnological human "enhancements", or can one do without? To answer this question we suggest employing the distinction between ideal and non-ideal theory, found in the debate in political philosophy about theories of justice: the distinctive views about whether one needs an idea of a perfectly just society or not when it comes to assessing the current situation and recommending steps to increase justice. In this paper we argue that evaluating human enhancements from a non-ideal perspective has some serious shortcomings, which can be avoided when endorsing an ideal approach. Our argument starts from a definition of human enhancement as improvement, which can be understood in two ways. The first approach is backward-looking and assesses improvements with regard to a status quo ante. The second, a forward-looking approach, evaluates improvements with regard to their proximity to a goal or according to an ideal. After outlining the limitations of an exclusively backward-looking view (non-ideal theory), we answer possible objections against a forward-looking view (ideal theory). Ultimately, we argue that the human enhancement debate would lack some important moral insights if a forward-looking view of improvement is not taken into consideration.