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Constitutional conventions: best practice

Basic 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.

Cloned food, open your throats for market nihilism

Produce from cloned animals has now entered the British food chain for the first time. This represents the dawning of a hazardous new era of for-profit nihilism and animal eugenics.

Steven Pinker and the mapping of the human genome

Personal genomics is poised to enter the consumer realm with all the whiz and bang that citizen media did in 2008. Suddenly, with the help of companies like Knome and 23andMe, those on the path to self-knowledge will be able to procure a full or partial sequence of their genome to unlock the fundamental secrets of the psyche. Personal genomics will be the ultimate litmus test of why we are the way we are. There will be no more need to confabulate why you are allergic to peanuts, close your left eye in bright sun, are woefully obese or got cancer at 45. It doesn’t just run in the family anymore. It runs in you. You will point to a long combination of adenine, thymine, guanine, and cytosine, conveniently folded in your breast pocket or downloaded to your iPhone, and explain everything to your thoroughly wowed cocktail party.

Maybe. Since Watson and Crick, geneticists have known genes express heritable traits that have been handed off to us over generations. How those traits can be interpreted in the age of personal genomics is complicated however. Steven Pinker, experimental psychologist at Harvard, recently submitted himself to 23andMe for genomic mapping. His results confirmed items he already knew about himself (above average intelligence, a predilection for walking), raised some potential reasons for worry (26.8 percent chance for Type 2 diabetes) and imparted some pretty useless errata, like the average odds for red hair. Pinker’s hair (see below) is a mass of gray.

Pinker notes that, while there is a “horoscopelike fascination of learning about genes that predict your traits,” the technology for interpreting our genomes for the public good is not up to scratch. Rather, most personal genomic technologies scan for common mismatches in the gene sequence that could cause a certain result your phenotype. Scanning for missing or repeated DNA is not part of the package yet. And identifying bumps in the sequence doesn’t necessarily advance our knowledge if we don’t know how many bumps, or at what frequency those bumps, cause a certain disease. Even if you discover you have the precise genetic sequence for obesity, no doctor can do anything with that information to help you avoid an untimely death from obesity-related complications. Eating less may still be the best prognosis, and it costs far less than a $100,000 gene scan.

Pinker has authored seven books on the nature of the homo sapiens and takes an evolutionary view to explain the puzzle of our species. When he spoke to Big Think he delved into his primary field of study, linguistic generativity with a particular focus on the nebula of irregular verbs. Grammar and language, Pinker argues, are hard-wired into our brains. When a child learns the word for a certain food, it evokes, like a page from the original hunter-gatherer lexicon, certain innate concepts. And over time these concepts imbue the word with a whole family of words and the child's gustatory vocabulary develops.

But, as other linguists have argued, one fundamental law of genetics undercuts this innate acquisition theory: generational variation. Thanks to Watson and Crick, we know variation occurs in the gene sequence. Thus, there would always be certain offspring born without entire concepts of language. They would go through life without the linguistic associations that come with "t-bone steak" or "Brussels sprouts." But such is not the case. Everyone child learns a vocabulary of food. Brussels sprouts are "yucky," a t-bone “delicious” and, unless Pinker's next foray into personal genomics will be to uncover a DNA-level support for his innate acquisition concept, social influences, more than evolution, seem to determine why we say what we say. Watch the video above for more on Pinker’s research.

 

The European Union and genetic information: time to act

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.

A UK Biobank: good for public health?

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.

Towards genomic solidarity: lessons from Iceland and Estonia

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’?

The Estonian Genome Project: a hot media item

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.

The Estonian Gene Bank Project - an overt business plan

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.

Decoding broken promises

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.

Genes and ownership: a scientific approach

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.

Genetic privacy unveiled

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’?

Whose cells are they, anyway?

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?

The business of genes

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.

Privatising our genes?

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.
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