sexta-feira, 12 de julho de 2013

The business of genes

About the author
These are extracts from the discussion forums of the openDemocracy pilot website.
What do we know?
19 May 2001
Christophe Van Huffel writes:
Even though we have made advances in studying the genome, I actually do not believe that we are any closer to understanding our inner workings in a synthetic way.
The synthetic description would be self-contained and would be understandable, usable (misusable) by politicians and any non expert person to influence ideologies or religions. The human genome has merely defined the basic building blocks that are necessary to initiate systematic approaches aiming at capturing the features of life and allowing us to try to describe certain correlations in a satisfactory way. This process involves complex data mining of large quantities of data that can only be managed by computers (not by the human brain).
So we lack a sense of feeling of what our life system is all about. This therefore still leaves a lot of room for freedom of thoughts and imagination. Beyond the human genome, higher levels of organization of human life need to be described (proteins, cells, tissues, organs, body). Most of those aspects of life are still very incompletely described and it is likely going to take a long time before we have sufficient knowledge about all those aspects to provide an integrated view of life, let alone the possibility of successfully integrating this information.
I suspect that the complexity of the system is too large to allow any human to derive a viable self contained description of our life that will make people feel different about what or who they are.
Christophe Van Huffel is Chief Scientist in Genomics at Starlab in Brussels.

Science and money
19 May 2001 Guido Van Steendam writes:
Science is not just the theoretical activity of pure minds in the air. Science needs investment.
It needs money to pay people, buildings and machines. The input of money in science - just like the input of money in any other human activity, including football games - can be corrupted; and of course it is necessary that institutions, scientific or other, organize themselves in a way that prevents such corruption.
Indeed, the author rightly mentions that the Human Genome Initiative required a huge amount of money. He ends his piece, though, by saying that although scientists need to deal with politics and money, the less so the better. Surely the question is not how much, but how?
Guido Van Steendam is Professor at the Biophilosophy Centre of Starlab in Brussels.

Inventions and discoveries
19 May 2001 Jack Klaff writes:
There are clear differences between inventions and discoveries. There is a clear distinction between creativity and knowledge.
How do you patent something that is inventive and creative? Well, that requires something between brightness and genius. How do you patent something that already exists? Well, that requires something called a good lawyer. There exist many people on earth, thank goodness, who allow free access to their creativity, knowledge, inventions and discoveries; the Open Source movement is bound to be a powerful force during the 21st century. There exist people who feel strongly that they should not pay so much, for example, to be able to see the Mona Lisa on their computer monitors, or for medicines, or to be educated. In short, there are people who believe there are inventions and discoveries which, as an inalienable human right, should be free. Biomolecular studies join atomic physics and computer science in a powerful troika which will ride through this century trailing powerful scientific revelations and an awesome range of questions for openDemocracy to address.
Jack Klaff works for public understanding of science at Starlab in Brussels.

Behaviour of scientists
19 May 2001 James Lutsko writes:
I read this piece with interest. IF the account is entirely factual, then I would hope that the Nobel committee - and all other scientific award committees - would avoid giving the Celera scientists any recognition since what they did is not science (it is not reproducible and cannot be checked). The behaviour of Science - as described in the article - is deplorable.
James Lutsko is Chief Scientist at Starlab in Brussels.

Human rights
19 May 2001 Richard Wheeler writes:
One of the great movements of the 21st century will be the application of open-source thinking to every aspect of human endeavor
The root question here is not one of ethics, but, like the larger struggles now playing themselves out on the world stage, one of common sense, and agreeing upon a shared perception of human rights. Surely some things belong to every person equally, as a small but equally held part of the trust placed in us by our very humanity. Many people believe these inalienable rights to include the freedom of decision over one's own body, and clearly, as outlined by the Bermuda accord, equal and unrestricted access to the road map of our own creation, the human genome.
Surely a single company or nation who seeks to own that which is common to all people cannot be included among the coalition of researchers formed around the common goal of enhancing human understanding, perception, and philosophy. Perhaps such a entity stands only at the margins of a civilized society.
I believe one of the great movements of the 21st century will be the application of open-source thinking to every aspect of human endeavor, and, more fundamentally, to the manner in which we perceive some types of knowledge. As with the effect which open source code and programming has had upon the software industry, an equally profound sea change will occur in fields from education to business and beyond.
Already in the scientific community we see the first rumblings of this - MIT opening all of its curriculum to the world freely, calls for scientific journals to be made free and open-access, and even within Starlab itself with the launching of One World Knowledge and the Free Medical School. What things belong to each person of the world as a basic human right? In addition to the human genome, can it be said that there are works of art, educational and health materials, even pharmaceuticals, which belong to all of the world community equally simply through the common recognition of their ability to transform human life and the human condition?
Should we create a common knowledge bank of those things commonly agreed to be freely and wholly owned by all people? Should one of the conditions of being granted FDA or other governmental approval for pharmaceuticals be that the company participates in an open source royalty-free program for the developing world organized by the World Health Organisation? These are the real questions that the human genome controversy are posing, and the answers will hopefully shake the foundations of our civilization itself.
Richard Wheeler is Chief Scientist in Artificial Intelligence at Starlab in Brussels.

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