Suchergebnisse

On 19 December 2008 the Official Journal of Belgium published the 'Law regarding the procurement and use of human body material destined for human medical applications or for scientific research purposes'. This paper will comment on various aspects of the Law: its scope of application (what is understood by 'body material'?); its concept of 'residual human body material' (with far-reaching implications for the type of consent required for research); the nature of actions with and uses of human body material that are explicitly prohibited; the right of donors to be informed of relevant information revealed by the use of their body material; and the special responsibilities placed on hospital ethics committees. As will be argued in this paper, several of these provisions are highly problematic from an ethical point of view, especially those relating to consent. Meanwhile, the Minister of Public Health has asked the Belgian Advisory Committee on Bioethics for advice on the incorporation of the 'presumed consent' model, that applies to post mortem organ donation, into the biobank Law's provisions on post mortem removal and use of body material. This aspect of the Law effectively extends the 'presumed consent' regime, both from organs to body material in general, and from therapeutic uses to research uses.

The book provides an in-depth discussion on the human nature concept from different perspectives and from different disciplines, analyzing its use in the doping debate and researching its normative overtones. The relation between natural talent and enhanced abilities is scrutinized within a proper conceptual and theoretical framework: is doping to be seen as a factor of the athlete's dehumanization or is it a tool to fulfill his/her aspirations to go faster, higher and stronger? Which characteristics make sports such a peculiar subject of ethical discussion and what are the, both intrinsic and extrinsic, moral dangers and opportunities involved in athletic enhancement? This volume combines fundamental philosophical anthropological reflection with applied ethics and socio-cultural and empirical approaches. Furthermore it presents guidelines to decision- and policy-makers on local, national and international levels.

Current methods of genome editing have been steadily realising the once remote possibilities of making effective and realistic genetic changes to humans, animals and plants. To underpin this, only 6 years passed between Charpentier and Doudna's 2012 CRISPR-Cas9 paper and the first confirmed (more or less) case of gene-edited humans. While the traditional legislative and regulatory approach of governments and international bodies is evolving, there is still considerable divergence, unevenness and lack of clarity. However, alongside the technical progress, innovation has also been taking place in terms of ethical guidance from the field of patenting. The rise of so-called "ethical licensing" is one such innovation, where patent holders' control over genome editing techniques, such as CRISPR, creates a form of private governance over possible uses of gene-editing through ethical constraints built into their licensing agreements. While there are some immediately apparent advantages (epistemic, speed, flexibility, global reach, court enforced), this route seems problematic for, at least, three important reasons: 1) lack of democratic legitimacy/procedural justice, 2) voluntariness, wider/global coordination, and sustainability/stability challenges and 3) potential motivational effects/problems. Unless these three concerns are addressed, it is not clear if this route is an improvement on the longer, slower traditional regulatory route (despite the aforementioned problems). Some of these concerns seem potentially addressed by another emerging patent-based approach. Parthasarathy proposes government-driven regulation using the patent system, which, she argues, has more transparency and legitimacy than the ethical licensing approach. This proposal includes the formation of an advisory committee that would guide this government-driven approach in terms of deciding when to exert control over gene editing patents. There seem to be some apparent advantages with this approach (over traditional regulation and over the ethical licensing approach mentioned above—speed and stability being central, as well as increased democratic legitimacy). However, problems also arise—such as a "half-way house" of global democratic legitimacy that may not be legitimate enough whilst still compromising speed of decision-making under the "ethical licensing" approach). This paper seeks to highlight the various advantages and disadvantages of the three main regulatory options—traditional regulation, ethical licensing and Parthasarathy's approach—before suggesting an important, yet realistically achievable, amendment of TRIPS and an alternative proposal of a WTO ethics advisory committee.

Introduction to personalised medicine, individual choice and the common good / Donna Dickenson, Britta van Beers and Sigrid Sterckx -- Personalised medicine and the politics of human nuclear genome transfer / Francoise Baylis and Alana Cattapan -- Stem cell derived gametes and uterus transplants : hurray for the end of third party reproduction! or not? / Heidi Mertes -- Personalising future health risk through 'biological insurance' : proliferation of private umbilical cord blood banking in India / Jyotsna Gupta -- Combating the trade in organs : why we should preserve the communal nature of organ transplantation / Kristof Van Assche -- When there is no cure : challenges for collective approaches to Alzheimer's disease / Robin Pierce -- Lost and found : relocating the individual in the age of intensified data sourcing in European healthcare / Klaus Hoeyer -- Presuming the promotion of the common good by large-scale health research : the cases of care.data 2.0 and the 100,000 genomes project in the UK / Sigrid Sterckx, Sandi Dheensa and Julian Cockbain -- My genome, my right / Stuart Hogarth, Julian Cockbain and Sigrid Sterckx -- 'The best me I can possibly be' : legal subjectivity, self-authorship and wrongful life actions in an age of 'genomic torts' / Britta van Beers -- I run, you run, we run : a philosophical approach to health and fitness apps / Marli Huijer and Christian Detweiler -- The molecularised me : psychoanalysing personalised medicine and self-tracking / Hub Zwart

This book discusses the agency and responsibility of individuals in climate change, and argues that these are underemphasized, enabling individuals to maintain their consumptive lifestyles without having to accept moral responsibility for their luxury emissions.