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The rapid development of biobanks internationally reflects the considerable expectations attached to the exploitation of genetics knowledge. However, establishing consent and legitimacy for the new generation ...
Key activities in biomedicine and related research rely on collections of biological samples and related files. Access to such resources in industry and in academic contexts has become strategic and represents...
Key to concerns about public involvement in technology governance is the concept of lay expertise, the idea that lay people possess some kind of special knowledge that neither trained experts in technology, et...
Genetic and other biotechnologies are starting to impact significantly upon society and individuals within it. Rose and Novas draw on an analysis of many patient groups to sketch out the broad notion of biocit...
According to advocates and authors from different disciplines interested in biomedicine, biomedical research in genetics and genomics has the potential to transform medicine, the economy, society, and humanity...
Storage and secondary use of bloodspots collected for newborn screening raises controversies because of the particularly sensitive nature of the information that can be derived from them and the lack of nation...
The paper uses insights from the so-called rape in disguise case study to describe forensic DNA practices in the Netherlands in late 1980s. It describes how "reliabilities" of forensic DNA practices were achieved...
The completion of the Human Genome Project has opened up unprecedented possibilities in healthcare, but also ethical and social dilemmas in terms of how these can be achieved. Genomic information can be seen a...
Biotechnology and genomic innovation are seen as increasingly important for achieving public health goals in Africa. In particular, vaccines based on advances in genomic technology are deemed vital in the figh...
On 26 June 2000, during the presentation of the Human Genome Project's first draft, Bill Clinton, then President of the United States, claimed that "today we are learning the language in which God created life".1
When we talk about ideology and new genetics we tend to think of concepts like geneticisation and genetic essentialism, which present genetics and biology in deterministic terms. However, the aim of this artic...
The extension of intellectual property rights into the realm of biology has emerged as an increasing focus of controversy in relation to science,2 biodiversity,3 agriculture,4 health,5 development,6 human rights7
Edwin Southern developed a blotting technique for DNA in 1973, thereby creating a staple of molecular biology laboratory procedures still used after several decades. It became a seminal technology for studying...
With a shift from genetics to genomics, the study of organisms in terms of their full DNA sequences, the resurgence of eugenics has taken on a new form. Following from this new form of eugenics, which I have t...
This paper has been prepared from the perspective of the ESRC Genomics Policy & Research Forum, which has the particular mandate of linking social science research on genomics with ongoing public and policy de...
With the completion and the success of the unraveling of the human and some nonhuman genetic codes comes the optimism that science, once again, is at the threshold of transforming human existence in an unprece...
This paper presents an interview study among scientists working with Decode genetics in Iceland and lay individuals having recently donated blood to Decode. While genuinely enthusiastic that genetic technologi...
To explore new mothers' knowledge of newborn screening, and their attitudes towards issues surrounding sample retention and the potential for blood screening samples to be used for research.
In the recent past a number of empirical studies provided evidence that increasing genetic knowledge leads to new forms of exclusion, disadvantage and stigmatisation. As a consequence, many states have inaugur...
Large-scale genetics cohort studies that link genotypic and phenotypic information hold special promise for clinical medicine, but they demand long-term investment and enduring trust from human research partic...
In discussions on genetic engineering and plant breeding, the intrinsic value of plants and crops is used as an argument against this technology. This paper focuses on the new field of plant genomics, which, a...
It is essential for scientists to introduce their research in a comprehensible manner and to communicate with colleagues in the same/different fields and with the public. As genome research requires the massiv...
To examine the relative cost-effectiveness of predictive genetic tests for familial breast and ovarian cancer provided by Genetic Services of Western Australia.
Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects' rights, principally informed consent, with some gestures toward public benefits. However, i...
Human genetic research databases cast a new light on the controversial issue of which uses of the human body are morally permissible. More specifically, banking human tissue raises issues relating to the owner...
The Human Genome Project and the related research and development activities have raised heated discussions around some very basic ethical and social issues. A much debated concern is that of justice in human ...
Access to detailed, up-to-date and available bioinformatics databases has been identified by the Commission of the European Union as a pillar for the harvesting of the potential of life-sciences and biotechnol...
This highly speculative paper seeks to discern where the discipline of Bioethics may be heading in the next decade or two. It is clear that the rapid pace of scientific discovery and technological innovation w...
While providing a welcome and timely revision of the now outdated Human Tissue Act of 1961, the newly introduced Human Tissue Bill of 2004 contains a number of anomalies in its drafting that threaten to underm...
The regulation of stem cell research is an issue that has drawn much comment, criticism and even judicial arbitration in recent years. An emerging issue, addressed in this article, is how the fruits of that re...
One important sense of 'global ethics' concerns the applied ethical issues arising in the context of economic globalisation. This article contends that we are beginning to witness the economic commodification ...
There is widespread anxiety about the commercialisation and commodification of human tissue. The aims of this paper are: (a) to analyse some of these concerns, and (b) to see whether some of the main ethical a...
This paper considers the ethical issues raised by biobanking of material from children who are not mature enough to give ethically valid consent. The first part considers consent requirements for entry of such...
Ethical challenges in genomic epidemiology are the direct result of novel tools used to confront scientific challenges in the field. An orders-of-magnitude increase in scale of genetic data collection has crea...