A scientific community cannot practice its trade without some set of received beliefs. These beliefs form the foundation of the "educational initiation that prepares and licenses the student for professional practice". The nature of the "rigorous and rigid" preparation helps ensure that the received beliefs are firmly fixed in the student's mind. Scientists take great pains to defend the assumption that scientists know what the world is like...To this end, "normal science" will often suppress novelties which undermine its foundations. Research (...) is therefore not about discovering the unknown, but rather "a strenuous and devoted attempt to force nature into the conceptual boxes supplied by professional education". (shrink)

Thomas S. Kuhn's classic book is now available with a new index.

Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a (...) remarkable relevance to present concerns, since the possible developments that worried ex-participants and participants 16 years ago now are becoming realities. Drawing on conceptual distinctions by sociologist and philosopher Niklas Luhmann, we argue that while ex-participants express a loss of trust in the biobank institution to manage the use of their biobank material in a legitimate way, remaining participants expressed confidence in the management of the biobank institution to secure their interests. This analysis brings out important aspects of emerging trends in biobank research participation. (shrink)

In this paper, we tell the story of efforts currently underway, on diverse fronts, to build digital knowledge repositories to support research in the life sciences. If successful, knowledge bases will be part of a new knowledge infrastructure—capable of facilitating ever-more comprehensive, computational models of biological systems. Such an infrastructure would, however, represent a sea-change in the technological management and manipulation of complex data, inducing a generational shift in how questions are asked and answered and results published and circulated. Integrating (...) such knowledge bases into the daily workflow of the lab thus destabilizes a number of well-established habits which biologists rely on to ensure the quality of the knowledge they produce, evaluate, communicate and exploit. As the story we tell here shows, such destabilization introduces a situation of unfamiliarity, one that carries with it epistemic risks. It should elicit—to use Niklas Luhmann’s terms—the question of trust: a shared recognition that the reliability of research practices is being risked, but that such a risk is worth taking in view of what may be gained. And yet, the problem of trust is being unexpectedly silenced. How that silencing has come about, why it matters, and what might yet be done forms the heart of this paper. (shrink)

Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased (...) tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. (shrink)

Data-intensive science comes with increased risks concerning quality and reliability of data, and while trust in science has traditionally been framed as a matter of scientists being expected to adhere to certain technical and moral norms for behaviour, emerging discourses of open science present openness and transparency as substitutes for established trust mechanisms. By ensuring access to all available information, quality becomes a matter of informed judgement by the users, and trust no longer seems necessary. This strategy does not, however, (...) take into consideration the networks of professionals already enabling data-intensive science by providing high-quality data. In the life sciences, biological data- and knowledge bases managed by expert biocurators have become crucial for data-intensive research. In this paper, I will use the case of biocurators to argue that openness and transparency will not diminish the need for trust in data-intensive science. On the contrary, data-intensive science requires a reconfiguration of existing trust mechanisms in order to include those who take care of and manage scientific data after its production. (shrink)

Both a significant body of literature and the case study presented here show that digital knowledge repositories struggle to attract the needed level of data and knowledge contribution that they need to be successful. This happens also to high profile and prestigious initiatives. The paper argues that the reluctance of researchers to contribute can only be understood in light of the highly competitive context in which research careers need to be built nowadays and how this affects researchers’ quality of life. (...) Competition and managerialism limit the discretion of researchers in sharing their results and in donating their working time. A growing corpus of research shows that academic researchers are increasingly overworked and highly stressed. This corroborates the point that the room for undertaking additional tasks with future and uncertain benefits is very limited. The paper thus recommends that promoters of digital knowledge repositories focus on the needs of the researchers who are expected to contribute their knowledge. In order to treat them fairly and to ensure the success of the repositories, knowledge sharing needs to be rewarded so as to improve the working conditions of contributors. In order to help implementing this researcher-centred approach, the paper proposes the idea of expediential trust: rewards for contributing should be such that rational, self-interested researchers would freely decide to contribute their knowledge and effort trusting that this would make them better off. (shrink)

The idea of personalised medicine (PM) has gathered momentum recently, attracting funding and generating hopes as well as scepticism. As PM gives rise to differing interpretations, there have been several attempts to clarify the concept. In an influential paper published in this journal, Schleidgen and colleagues have proposed a precise and narrow definition of PM on the basis of a systematic literature review. Given that their conclusion is at odds with those of other recent attempts to understand PM, we consider (...) whether their systematic review gives them an edge over competing interpretations. We have found some methodological weaknesses and questionable assumptions in Schleidgen and colleagues’ attempt to provide a more specific definition of PM. Our perplexities concern the lack of criteria for assessing the epistemic strength of the definitions that they consider, as well as the logical principles used to extract a more precise definition, the narrowness of the pool from which they have drawn their empirical data, and finally their overlooking the fact that definitions depend on the context of use. We are also worried that their ethical assumption that only patients’ interests are legitimate is too simplistic and drives all other stakeholders’ interests—including those that are justifiable—underground, thus compromising any hope of a transparent and fair negotiation among a plurality of actors and interests. As an alternative to the shortcomings of attempting a semantic disciplining of the concept we propose a pragmatic approach. Rather than considering PM to be a scientific concept in need of precise demarcation, we look at it as an open and negotiable concept used in a variety of contexts including at the level of orienting research goals and policy objectives. We believe that since PM is still more an ideal than an achieved reality, a plurality of visions is to be expected and we need to pay attention to the people, reasons and interests behind these alternative conceptions. In other words, the logic and politics of PM cannot be disentangled and disagreements need to be tackled addressing the normative and strategic conflicts behind them. (shrink)

In A Social History of Truth, Shapin engages these universal questions through an elegant recreation of a crucial period in the history of early modern science: ...

Most traditional epistemologists see trust and knowledge as deeply antithetical: we cannot know by trusting in the opinions of others; knowledge must be based on evidence, not mere trust. I argue that this is badly mistaken. Modern knowers cannot be independent and self-reliant. In most disciplines, those who do not trust cannot know. Trust is thus often more epistemically basic than empirical evidence or logical argument, for the evidence and the argument are available only through trust. Finally, since the reliability (...) of testimonial evidence depends on the trustworthiness of the testifier, this implies that knowledge often rests on a foundation of ethics. The rationality of many of our beliefs depends not only on our own character, but on the character of others. (shrink)