The sudden assertion of human criteria within a dehumanising framework of political manipulation can be like a flash of lightning illuminating a dark landscape
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genes & ownershipBasic genome information is already public, but scientists, universities, and biotech companies are patenting information about how genetic information affects our health. And we are only just beginning to understand what the strings of base pairs code for, what their product does in the human body and how changes in the correct code affect human health...
The list is a string of about 3 billion base pairs of DNA whose every newly sequenced segment holds a possible clue to a treatment for cancer or heart disease. Such benefits to humanity and the associated economic gains to suppliers provide more than enough incentive for researchers to consider how to protect their discoveries.
The principle of genetic testing of entire populations carries the great risk of putting the integrity of the individual in the service of commercial interests. The ensuing struggle for control of information cannot be resolved on the national level alone. Within the European Union, the tension between the internal market in services and harmonisation of national legislation reveals the urgent need for a European policy on genetic information. Read the rest of this post...
Could GeneWatch UK be exactly the kind of ‘genetic union’ Mike Fortun advocated as a vehicle for ‘genomic solidarity’? Here, its deputy director focuses on the controversial Biobank UK, and questions its aims, cost, science and commerce. She makes the case for a democratic debate which alerts the public to the moral and political issues it raises, and helps find a way of reconciling scientific progress with citizens’ rights. Read the rest of this post...
How can the experiences of Iceland and Estonia in establishing national Genes Banks contribute to a global understanding of genes and ownership? An American life sciences historian recommends adopting the model of labour unions as a way to inform donors and public about all the variables of research and consent. Could Britain, with its strong union history and recent creation of the UK Biobank, be a pioneer of such ‘genomic solidarity’? Read the rest of this post...
The Head of Information of the Estonian Genome Project Foundation replies to Tiina Tasmuth’s critique and argues that those with ‘dissenting views’ are few while the majority of Estonians support the country’s Gene Bank project. Read the rest of this post...
The Estonian Genome Project Foundation tried to build on the experience of Iceland’s innovative, contested genetic research project (analysed by Skúli Sigurdsson in openDemocracy). Did the small Baltic state learn from Iceland’s mistakes? A research fellow and close observer of the Estonian initiative tells the fascinating, melancholy story – which challenges the corporate interests involved to respond. Read the rest of this post...
Five years ago, the company deCODE made the first bid to set up a comprehensive, medical records database, in Iceland. A leading activist explores the ways in which the equation of medical data with economic promise can lead to the erosion of truth, raising the key issue of presumed versus informed consent and other challenges for any democratic society. Read the rest of this post...
Genetic testing and stem cell research are two areas of recent development which are receiving considerable public and political interest, and which have very important social, economic and political repercussions. But the scientific concepts at issue are poorly understood, which may well fatally distort the debate. Read the rest of this post...
How will data revealing the health risks embedded in our genetic make-up affect our health insurance and employment chances? Will we ask policy-makers to regulate the emerging market for genetic testing? Or, can market mechanisms be trusted to protect ‘genetic privacy’? Read the rest of this post...
Scientific research using stem cells may prevent disease and save lives. But concerns over intellectual property rights and the use of human embryos may block its advance. Can science survive if it becomes privately owned? Read the rest of this post...
Mike Ashburner's article 'Privatising our genes' recounts how the race for the human genome raises questions about the forces of scientific advancement and their relationship with both governments and private companies: most urgently, whether patents can be extended into the human genome. Here are some openDemocracy readers' reactions to the story. Read the rest of this post...
Money and power, as well as the passion for knowledge, drove the race to map the human genome. One of the world’s leading geneticists sees lessons for the public realm beyond the laboratory. Read the rest of this post...
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