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It was a privilege to be able to hear about the latest research into a particular neurological affliction at a small seminar in Maryland a few years ago. The audience consisted of people who suffered from the affliction, and their families. The speaker was a neurologist who had gained national prominence for his expertise and research on this particular disorder. His presentation was upbeat for a discussion of a malady that has no known cause, no cure, and few effective treatments — all doctors can do is manage the symptoms, which vary widely from case to case. But he stressed the many research programs under way to find at least a treatment for the disease, maybe one day a cure, as he sought to give hope for improvement to people who do not now have any.
What he talked about most was genetic research. The gene associated with the disease has been identified, he said, and any day now scientists will learn how to shut that gene off and perhaps cure the disease.
That’s what he said, the gene “associated” with the disease. I’m sure what everybody in the room heard was, the gene that causes the disease. Anyone can find out whether they have the gene with a simple test — a test that costs $3,000, and which no insurance policy covers.
But you’d know, right, and you’d be poised to join the stampede for the cure as soon as they got the “genetic engineering” right.
When the seminar was winding down, I asked the good doctor two questions that told me everything I need to know about genetically-manipulated cures.
Question Number One: If I get the test, and I have the gene, does that mean it is certain that I will get the disease? Answer (after a long pause): No.
Question Number Two: If I get the test, and I do not have the gene, does that mean it is certain that I will not get the disease? Answer (after an even longer pause): No.
So much for simplistic genetic answers and cures. So much for the notion that the human organism is controlled by a set of dip switches that are either on or off, and that can be reset by human intervention.
He was a good and honest man, I think, who chose his words carefully and worked hard to avoid giving false hope. I imagine most scientists are like him. But the publicists who blow the trumpets about his work, and the media who cover it, are playing from a different song sheet entirely. They talk endlessly of miracle cures, extended lives, cuter and smarter babies, just as soon as they figure out how to configure the dip switches.
For years we have been regaled with their apparent victories. Eighteen years ago they claimed to have mapped the human genome, to have identified every one of its 3.2 billion bases after years of work by scientists all over the world. They were giddy about the achievement despite the fact that their map labelled 97% of the labelled bases as “junk” DNA, that had no apparent purpose.
This reminded some of us of a crashed but intact airliner being studied by some isolated, primitive tribe who declare, after checking each and every switch on board, that most of them don’t seem to do anything.
That’s that it’s beginning to look like to genetic scientists. Ewan Birney, a world leader in the continuing study of the human genome, says he is making progress: “previously I was ignorant of my own ignorance, and now I understand my ignorance.” Birney, who runs an international consortium of 400 genetic researchers, recently told Scientific American Magazine that up to 80% of human genes may be involved in regulating the functions of other genes, in a bewildering myriad of complex and subtle and constantly changing relationships. Birney expresses none of the confident simplicity of the proponents of miracle cures and designer babies:
“What it feels like is genuinely a jungle—a completely dense jungle of stuff that you have to work your way through. You’re trying to hack your way to a certain position. And you’re really not sure where you are, you know? It’s quite easy to feel lost in there.”
The genetic studies and triumphs of the recent past have tended to focus on how one gene is associated with one trait, or disease. Leading edge researchers now are talking more and more about an “omnigenic” view, that starts by asking, “What if (almost) every gene affects (almost) everything?”
Yes, it’s a jungle in there, and a lot more people are going to get lost before they admit that getting to designer babies and vanquished diseases is not merely difficult — it is impossible, and that some things, such as the operation of the human genome, are not merely obscure, but unknowable.
A few days ago I saw a “Better – Stronger – Crispr” t-shirt in Cambridge, Mass. (major hub of bioresearch). I had to stuff the urge to say something.
The eternal promise of better living through technology is a siren song. Yet it continues to transfix us. Problem is, the purported technology is increasingly exotic and produces unreliable, unintended, and questionable results. Meanwhile, the relatively easy stuff we might do to either alleviate suffering or improve wellbeing is handily skipped over. Financial incentives toward such improvements are too weak. Better, I guess, to tantalize folks with vaporware and expensive magic.
I think it’s instinctual (or ‘instinctive’ – I never know how to use these words in context) for humans to invent shit; any kind of shit will do – the more challenging the better. Just as certain predatory species – lions notably – have been observed hunting and killing even when fully sated, so humans are compelled to create stuff, even when they already have ample.
One can see how this characteristic served our prehistoric ancestors well as they scrimped and scraped in a wild world. Creativity was necessary for the naked ape. Now, however, the survival need is long gone, but the instinct remains…and it’s killing the planet, at least as far as our purposes are concerned.
This is how worlds are changed. Evolution is without long-term goals; nature has no agenda – only immutable law.
So in essence, boredom is the “last” frontier or is the ultimate omen of our demise. We just make up sh*t for the sake of it. I can’t find a more nihilistic way of putting it than what you described.
Good observation, if a little melodramatic. However, as far as nihilism is concerned, I don’t believe in philosophy per se.
In June, two studies published in Nature Medicine demonstrated that cells altered with CRISPR may be missing key anti-cancer mechanisms, increasing the risk that those cells will initiate tumors.
On Monday, research published in Nature Biotechnology added to these concerns by showing that CRISPR can mess up a cell’s genetic material even worse than previously thought.