In this article I consider some central aspects of the naturalist philosophy of science and science and technology studies in dealing with the contested status of technoscience in medicine. Focusing on the concepts of realism and representation, I argue that theories of science-as-practice in naturalist philosophy of science should expand their scope so as to reflect more thoroughly on the social and political context of technoscience. I develop a hermeneutic of technomedical objects in order to highlight the internal connectedness between (...) social action, material agency, and the actions of scientific communities. The framework thus developed is used to re-consider the genomic turn in medicine. Pointing to the discrepancies between socially dominant representations of genomic technology and the actual interventions brought about through those technologies, I raise the question of how and where to address problems of theory and policy. (shrink)

There has been extensive discussion in research ethics literature surrounding the appropriate form of informed consent for biobanking, whether with adapted content, or adapted forms such as broad or tiered consent. These discussions presuppose that it is possible to disclose adequate information at the outset to facilitate an informed choice to donate to a biobank. I will argue that informed consent cannot be achieved because in the biobanking context, we are either consenting to an enterprise that is not research or (...) to future research. Nor is the solution to abandon the idea that informed consent ethically requires the disclosure of a certain minimal amount of information to make an informed choice by misleadingly identifying broad, blanket or even tiered consent as forms of ‘informed’ consent. Rather, we should abandon the idea that informed consent for research can be adapted to the type of endeavor that biobanking is, and understand the goal as to develop alternatives not as alternative forms of informed consent, but rather alternatives to informed consent. (shrink)

Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued (...) that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified. (shrink)

Philosophical anthropologies that emphasise the role of the emotions can be used to expand existing notions of moral agency and learning in situations of great moral complexity. In this article we tell the story of one patient facing the tough decision of whether to be tested for Huntington’s disease or not. We then interpret her story from two different but compatible philosophical entry points: Aristotle’s conception of Greek tragedy and Karl Jaspers’ notion of Grenzsituationen (boundary situations). We continue by indicating (...) some ways in which these two positions may be used for reflecting upon different perspectives involved in clinical decision-making, those of patients, clinicians and bioethicists. We conclude that the ideas we introduce can be used as hermeneutic tools for situating learning and dialogue within a broader cultural field in which literature and art may also play important roles. (shrink)

In this response to Neil Manson’s latest intervention in our debate about the best consent model for biobank research we show, contra Manson that the ‘expiry problem’ that affects broad consent models because of changes over time in methods, purposes, types of data used and governance structures is a real and significant problem. We further show that our preferred implementation of meta consent as a national consent platform solves this problem and is not subject to the cost and burden objections (...) that Manson raises. (shrink)

ABSTRACT A major moral problem in relation to the deCODE genetics database project in Iceland is that the heavy emphasis placed on technical security of healthcare information has precluded discussion about the issue of consent for participation in the database. On the other hand, critics who have emphasised the issue of consent have most often demanded that informed consent for participation in research be obtained. While I think that individual consent is of major significance, I argue that this demand for (...) informed consent is neither suitable nor desirable in this case. I distinguish between three aspects of the database and show that different types of consent are appropriate for each. In particular, I describe the idea of a written authorisation based on general information about the database as an alternative to informed consent and presumed consent in database research. (shrink)