Sunday
Medical researchers have condemned the new Human Tissues Bill as an impediment to teaching and research.
But scientists say the changes go too far and will make teaching and medical research extremely difficult.There is no discrimination between whole organs and a collection of a few cells on a microscope slide, they say.
Cancer charities and the Wellcome Trust are calling on ministers to make changes to the Bill.
Doctors have to obtain written consent if they wish to use any form of human tissue removed from a person living or dead, even if they are checking for the prevalence of a virus in the general population. One can think of the consequences if tests could not have been carried out for AIDS, given the level of stigmatisation that accompanied the virus. There is a quandary since informed consent is surely necessary before the tissues of any individual are extracted, preserved and used for any purpose, even if it is for public health.
However, it is estimated that 3,000,000 samples and 100,000,000 blood samples will require written consent, proving another bureaucratic excess for the NHS. Public health is often used as an argument to override the concerns or refusal of an individual to provide any form of sample. No doubt there is an argument that rational individuals will understand the necessity of acting in concert when faced with an unknown disease or epidemic. However, this is often not the case.
Grappling with the issue of public health and a libertarian society, certain questions have presented themselves: Do individuals who refuse to cooperate with ventures sourced in civil society to track and curb the spread of any disease in a minarchy open themselves to claims of compensation since their actions could be viewed as endangering others? At such times, is the action of 'opting out' of a collective venture to track and curb an epidemic by any individual sufficient to trigger claims against that individual on the grounds that their actions placed others in danger?
Perry de Havilland has limited the notion of public health to "communicable diseases", but even here, it is unclear if such matters require a coercive authority mandated to use the measures necessary to curb any disease. As it stands, the new Human Tissues Law will require written consent before any part of your body is taken and used for another purpose, even if it is in your own interest. Surely an advance on the contemporary thefts by state institutions in the name of 'research'.
It will be interesting to see if this has any impact on the "right" of policemen to take DNA swabs from anybody they want, in order to build up Big Blunkett's national DNA database.
I predict there will be some weasel words in the Bill about "National Security" which will somehow be stretched to cover parking offences.
Anyone care to disagree?
Posted by Andrew Duffin at February 9, 2004 12:07 PM
I think this is a case were the practicality and political theory collide.
If we have a law that says every medical sample must be obtained with the full knowledge and permission of the donor then, as a practical matter, every sample, no matter how small, will have to have a paper trail that can be audited. If the paper trail for a sample is broken, then the sample is useless.
The cost of maintaining audit trails can grow huge and the mistakes made can expose one to expensive lawsuits. This will increase the cost research and distort the scientific process as researchers look for cheaper and legally safer research methods.
I don't know the details of this law but unless it was drafted to fix specific existing problems of privacy violations, organ theft etc, it sounds as if it's an overly broad piece of feel-goodism with potentially vast unintended consequences.
Posted by Shannon Love at February 9, 2004 01:40 PM
A worse bastard of populism and bureaucracy hasn't been spawned for a while. The problem isn't consent to the procedure--whatever it happens to be--because except in very restricted circumstances procedures require consent anyway. But the tracking of all samples and by-products of medical procedures, and the maintenance of paper trails, as if they applied to belongings people might have future use for, is a classic bureaucratic insanity. Every wart a corpse.
Perhaps it is a satanic NHS parody of personal property and personal identity, along the lines of its resource allocation mechanisms designed in mockery of a market.
More likely the British Civil Service, in its supreme confidence of being--like the NHS itself--the envy of the world, is once again disregarding all practical questions in search of a perfect administrative solution for the perfect administrative world in which filling in forms is the first and only priority. These are the people who brought you the officially successful Animal Movements Licensing System, after all.
Posted by Guy Herbert at February 9, 2004 02:24 PM
I would think that in the property sense, once you have agreed to have your bodily tissue taken it is not longer yours and should have no restriction on its useage unless specified prior to its taking.
In other words, when I donate blood, I dont say what it can be used for, because I dont really care. If I did, and I said I didnt want my blood used for 'x' purpose, then my donation would likely be refused. As far as organs and organ theft, more laws dont prevent thing like that, because paper trails can be created rather easily. All this is, is yet another law to make a legislator look like he/she is doing something, without the something having any real effect on the abuses and making the law abiders have to jump through more and more hoops.
I firmly beleive in the sanctity of the contract, but to force the use of a contract is just government control where there need be none.
Posted by limberwulf at February 9, 2004 10:10 PM
