May 16, 2004
PROMETHEUS DEMANDS A LAW:
Ban genetic bias, says Nobel scientist (Ian Sample, The Guardian, May 15, 2004)
The government's genetics advisers, the Human Genetics Commission, is considering proposals for a law to prevent people being discriminated against on the basis of their genetic make-up.The proposed legislation is designed to prevent the emergence of a genetic underclass, where people find themselves rejected by employers and unable to get life insurance, as a result of having genetic tests for medical conditions.
The proposal comes from Sir John Sulston, the Nobel prize-winning scientist who led Britain's effort to unravel the 3bn letter sequence of the human genetic code at the Sanger Institute in Cambridge. Professor Sulston, who sits on the Human Genetics Commission, has asked the committee to back his call for a tough mandate on genetic equity to prevent medical data from tests being misused by companies.
The proposal appears in a consultation document passed to members of the commission this week. In an interview with the Guardian, Prof Sulston said: "What we have to establish, right across the board, is the right for people to be treated equally, regardless of their genetic make-up. We can't just keep on fudging the issue."
The proposal was submitted with the backing of John Harris, a Manchester Law School professor and adviser to the British Medical Association, and Simona Giordano, a bioethicist at Manchester, both of whom sit on the commission.
The proposal states: "We affirm that humans are born equal, that they are entitled to equality of opportunity, and that neither genetic constitution nor genetic knowledge should be used to limit that equality ... this principle should be incorporated into UK legislation and practice."
Here is a good illustration of the conceit and moral cowardice of so many scientists. Dr Sulston and his colleagues unraveled the genetic code while promising us no end of wondrous benefits, primarily medical. Having won glory and honour by preying unabashedly on the hopes of the afflicted and their families, they now recoil in horror from the chilling implications and throw the whole mess onto the rest of us to clean up through laws and regulations. Far from expressing any misgivings at what they have wrought, or offering any moral reflections, they confuse themselves with Divine Providence and, from their privileged Olympian heights, thunder certainties about the eternal nature of man (did they pick those up in their arts electives?) and strident commands as to how the rest of us can and cannot use their labours.
It will not be clear to all why “companies” (the fount of evil and greed) should be denied information that scientists and doctors (the source of all beneficence) should have, but even if one admits some kind of regulation is needed, it is folly to imagine such simplistic solutions will last long. There will be too many necessary exceptions. For example, once the genetic code is claimed to reveal psychological predispositions, as it surely will, we will perceive a compelling public interest in knowing all we can about those in high risk professions, law enforcement and childcare. What aspiring politician will dare decline to make his genetic blueprint public after the first one does? Will lovers exchange full genetic reports before agreeing to marry? Inevitably this information will become as mundane as the results of an annual check-up.
The question of how to control the terrible beauties of modern science is not new, but what is new here is that, after all is said and done, we are talking about scientific claims to see the future. It appears we may be heading towards a society where all are marked at birth with putative foreknowledge of their health and character. They will be condemned to struggle against the terrifying legal, emotional and spiritual implications of that til the end of their days.
Posted by Peter Burnet at May 16, 2004 7:07 AMGreat post, Peter.
Posted by: Bruce Cleaver at May 16, 2004 7:48 AMI am sure that this post will be received by many here as "yet another anti-science" jab. Yet, emotions aside, at a minimum, all that is been requested is that scientific initiatives be subject to the same cynicism that we receive corporate and (especially now) military ones. It is yet to be seen, whether we should raise the cynicism alert to match that of "political" intiatives.
Posted by: MG at May 16, 2004 8:09 AMAn interesting comment appeared on Slashdot (ugh!) on a related topic. The poster opined that (1) the general population wasn't knowledgeable about stem-cell research; (2) most would be hobbled by religion; (3) therefore *scientists only* should set policy wrt stem-cell research.
I kid you not.
Posted by: Bruce Cleaver at May 16, 2004 9:27 AMYou know Bruce, I may just be tempted to strike a deal along those lines if also defined as average person, "Hollywood" and "the media", and broadened the "no opinion" zone to thinks they similarly know nothing about such as "military operations", "national security", "energy policy", "corporate finance", "environmental cost-benefot analysis", etc..oh, and "religion" and "conservatives".
Posted by: MG at May 16, 2004 9:58 AMTo the best of my knowledge (for what it's worth) there has been no resulting technology (?) that is a result of either unraveling the genetic code or embronic stem cell research - good or bad.
Adult stem cell research appears to be much more fruitfull than embronic...AND... the genetic code folks just mumble about how wrong their ignorant pontifications were before the unraveling and complaining that now they need to figure out all the proteins before they can be of any help.
MG --
I receive this post as another anti-JUNKscience jab.
It would be nice if scientists stuck to not only science but the area of science in which they have at least the competence of an under graduate lab bottle washer.
Many are just Krugman with a PhD in a non-dismal science. :-)
Posted by: Uncle Bill at May 16, 2004 10:31 AMMG -
You have uncannily anticipated my line of argument...
Posted by: Bruce Cleaver at May 16, 2004 10:31 AMGreat post Peter. However, I think that this contoversy is just a tempest in a test-tube. We already have genetic discrimination. Unhealthy people are denied health insurance on the basis of their medical record. Women and men do choose their spouse on the basis of genetically determined factors, such as health, beauty and personality.
You are describing the plot of the movie "GATTACA". The hero of the movie can't become an astronaut because he was conceived naturally, rather than through genetic enhancement, and belongs to that underclass you describe. He has a heart condition and bad eyesight to boot. But he fools the system and becomes an astronaut because of his over-arching spirit. However, read "The Right Stuff", and you will discover that the real astronaut program was one of the most genetically selective in history. One of the original Mercury Seven, Deke Slayton, was permanently grounded because of a heart murmur.
Genetic screening won't become a success because it doesn't give insight into the true capabilities of the person. The genes are only the starting point, they don't accurately predict the abilities of the finished product, especially the "spirit" factor. Companies would be screening out too many valuable employees if they tried to apply genetic information to their hiring practices. Better to screen the actual person as they are in the present, with their medical record and resume of accomplishments.
Dr Suston is according himself too much import. I think that in the next 30 years or so, the major disappointment for the genetics crowd will be the discovery on how unhelpful the genome is in predicting the future success of a person, outside of a few outlier scenarios.
Posted by: Robert Duquette at May 16, 2004 11:02 AMRobert: How was the astronaut program genetically selective? They were tested based on a huge range of physical and mental criteria, not their genes. Things like eyesight are purely genetic, but genes don't give you phenomenal cardiovascular fitness--you have to work at it. The astronauts had to be lucky genetically, sure, but they had to be phenomenally dedicated above all. Deke Slayton wasn't rejected because of a predisposition to a heart condition, he was rejected because he actually had a heart condition!
Uncle Bill--
The benefits from the Human Genome Project are actually huge, but subtle. Now that the whole genome is accessible online, it makes any genetic research immensely easier. I've taken advantage of it myself just for undergrad work. It's not the cure to all human ills that some might claim, but it's probably the most helpful biological research tool that exists.
Posted by: Timothy at May 16, 2004 1:43 PMInteresting column by Steven Pinker on the difficulties of manipulating/interpreting the human genome - The Designer Baby Myth.
Posted by: Doug Sitkin at May 16, 2004 6:27 PMBrian,
The point that I am making is that we have the equivalent of genetic screening now, except that genetic screening would be less effective at acheiving it's goals than the system we currently have in place. The fear associated with it is overblown.
Robert:
You may well be right that fears are overstated. I really am not qualified to make objective assessments of what this all may or may not mean, and I'm not sure whether I am troubled more by the science or the scientists.
But how come the positive effects of these developments are always promoted with great confidence and excitement and a promise of bringing early cures for the afflicted while the negatives are deemed to be overstated and alarmest because the science won't live up to its promise?
Posted by: Peter B at May 17, 2004 7:57 AMPeter B: It's the thrill of the new.
Posted by: M Ali Choudhury at May 17, 2004 8:05 AMPeter,
I think that the benefits are often overblown as well. I am not so much defending the science by stating the dangers are overblown as I am trying to avoid unnecessary and economically damaging laws and regulations to prevent a problem that may never materialize.
A younger version of myself was an enthusiast of the extreme science movement. M Ali hit it on the head, the thrill of the new has a lot to do with it. Now I look forward to buying new lawn toys, like a lawn vacuum/chipper/shredder. What about genetically engineered grass that weeds itself, that would be progress!!
Posted by: Robert Duquette at May 17, 2004 10:48 AM>It appears we may be heading towards a society
>where all are marked at birth with putative
>foreknowledge of their health and character.
Genetic determinism, i.e. total predestination under another name for those who have Evolved Beyond Religion. Like extreme astrology, except micromanaged by The Genes instead of The Stars.
Chesterton made the point in his Father Brown Mystery short "Doom of the Darnaways".
Posted by: Ken at May 17, 2004 12:51 PMRobert:
As Orrin wrote eloquently a while back, property, family, self-reliance and lawncare are hallmarks of a resilient society. You have to work for these, so genetic grass would be a sin. But we are not fanatics and I hear the Church will soon be reversing its traditional opposition to Weed 'n Gro.
Posted by: Peter B at May 17, 2004 1:49 PM