The Texas Vampires.
It sounds like the name of a biker gang from a bad TV show.
It sounds like a 90’s rave club in Austin wherever people think that eyeliner makes you look edgy.
It sounds like a drama in which Jonah Hill and Nic Cage play two men from Houston who have to steal Liberia’s oil.
But beyond those other things that it so obviously is,
the Texas Vampires refers to researchers from Baylor, Texas.
And the blood that they stole sparks one of the biggest questions on the horizon of our species.
And like all great stories, it starts with a bit of incest.
If you gave me access to your blood, and in that blood I found a cure to a disorder you had,
would I owe you that cure?
What if I found an imminent threat to your health?
Is it my duty to inform you of that threat?
Or is it my job to sell that information back to you?
Let's take it even further!
What if I find in your DNA an abnormality and isolate it.
Can I patent that abnormality?
After all, I did discover it.
But at the same time, it's a part of you.
So if I own it, do I not in essence own a part of you?
These are the questions that were thrust upon rural Newfoundland in the late 1990’s
as a swarm of researchers from Baylor University descended on the region surrounding Grand Falls.
They were looking for a rare gene called ARVD, a hereditary disorder
which causes sudden, fatal heart attacks in otherwise healthy men in their 20’s and 30’s.
And they had reason to believe that these tiny coves on the Atlantic were the key.
And they weren’t wrong.
After all, Newfoundland is a great place to study genetics under isolation.
Not to say it was done intentionally, but this island has a lot of, shall we say, pure bloodlines.
Nearly ninety percent of all islanders come from an original twenty or thirty thousand settler stock,
and coves were often settled by only one or two large families,
with little contact beyond their local region.
Much of the genetic material that had arrived from Ireland, England and Wales three hundred years ago
could still be found swirling in some of these harbours.
But those researchers from Baylor weren’t here to expose any family trees as trunks.
They were here to harvest genetic material.
And as much as I joke, these were, after all, valuable blood lines.
And despite their University headline, at their core Baylor was here as a commercial operation.
Their quiet aim was to obtain a cure that they could then sell back to the very people
whose blood had made it all possible.
And like any business looking for access to a rare commodity, they weren’t above lying to obtain it.
In turn, people here felt truly taken advantage of.
It’s important to understand that the outporters of Newfoundland aren’t accustomed to contracts.
They don’t own suits, and they don’t like cities.
They’re the types of people who still use landline phones to get in contact with someone
who runs the general store.
They fish all day, eat moose straight out of the forest, and think any type of bread
but a straight white loaf is putting on airs.
They’re some of the nicest people you’ll ever meet in your life,
but its easy to see how they could be taken advantage of.
Some residents report being coerced into signing through intimidation efforts that aimed at their health.
Remember that these are foreign doctors arriving in a small town saying that there is a chance
that you're going to just keel over dead at any time.
And if you give them your blood, they might be able to find out who the lucky ones are.
Or even better, they might be able to cure it.
Other people just simply didn’t understand what they were signing.
What they did understand is that this was a university who had arrived needing help.
And it was polite to help.
So they helped.
It was only after everybody left and the information stopped coming that they started to ask,
what happened to us.
The CBC did an investigative report and asked Baylor directly what they’d intended to do to make it right,
but the University simply refused to answer any questions.
They had the blood now, and that was that.
Eventually, using the samples they’d obtained in Newfoundland, the team of researchers announced
they’d isolated the gene that causes ARVD.
A potentially lucrative breakthrough.
And while I sympathize with the outport Newfoundlanders, I do understand
where the researchers are coming from.
It isn’t as though they were trying to do evil.
From their point of view, they're ultimately helping the Newfoundlanders.
By commercializing their genetic problem, they're allowing them the opportunity to purchase back a solution.
And while some people might focus on the word purchase, they were choosing to focus on the word opportunity.
It's better than the no solution they had before.
I think that the real issue here was that this was a bit of true Texas culture,
misunderstood in the Newfoundland ear.
For a people long accustomed to Canadian government healthcare, they couldn’t imagine
that due to a hastily signed contract the right to their DNA might no longer be theirs.
That the doctors weren't there to help them.
The problem that we face is deeper than simply who owns which blood.
Because the real issue at stake is who owns the genetics within.
We are quietly sitting on the bloom of a very different time, genetically.
Biotech is the new space race.
And just like the information age has stolen our data and monetized it for their profit,
so too will the geneticists.
From the labs of Baylor University, they’ve already begun.
Which isn’t to say that it’s by definition bad.
I believe that both sides have valid reasons supporting their points.
Information is money.
I get that.
But it does raise questions.
Let’s say that a company finds a variation within your DNA for the cure for Huntington’s.
Hundreds of people around the world would pay you millions for it,
and any company that can isolate the gene would be handsomely rewarded.
But if this company is going to be turning a profit from a cure that's based on access to my DNA,
shouldn't I be the one selling my DNA on the open market?
Why let them do it?
If the point of profit making in pharmaceuticals is that it's the person taking the risk who profits,
shouldn't the person who might die at any given time be the one considered taking the risk?
In effect, doesn't that mean that these researchers from Texas just conned foreign citizens out of valuable property?
Raw ore may not be steel, but it's still considered valuable.
I don’t know the answer.
I’m certainly not an expert on the subject.
Law or biology.
But I do know that the people of Newfoundland are right pissed at those Texans.
Pissed enough to nickname them vampires.
And while it’s all well and good that Newfoundland learned from its outrage,
there’s more to it than the ownership of blood.
Stories like this hint at a future just beyond a quickly opening door.
What are the economics of designer genetics?
Will the model for your deep blue eyes have been handsomely rewarded?
Or is that minimum wage job?
Will the flowing locks of amber hair that are the new fad of an altered generation even know he’d been harvested?
Or would he have simply used a glass after not reading some newspaper's waiver?
How quickly before celebrities and pro-athletes are selling their personal features to the highest bidders?
They’d be a worth a fortune.
You know it.
I can think of so many men who’d pay a year’s salary to make sure their son had Brad Pitt’s chin.
Information is money, and DNA – the personal characteristics that make us, us,
will undoubtedly become a new battleground in that eventual market.
Although I wonder if the same thing can be said about disorder.
Maybe someday being born with a crippling disability might come with the upside of
being able to sell your genetic misfortune for cash.
Or maybe the government will simply force you to hand it over for the public good.
Depends on the nation, I suppose.
It is nice to think of the little guy getting something back for his suffering though.
I don't think it's likely, but if the genetic revolution is as uprooting as I expect it to be,
I hope there's at least some silver lining for the freaks.
I do doubt it though.
A fisherman rarely gets his share.
Instead, I bet their blood's gonna be swindled away by some Jonah Hill looking Texan
with black eyeliner and an overworked syringe.
This is Rare Earth.
- I know in Alberta they've had some pretty big ones already.
- I've got a brother in Edmonton. He told me they've got 6 or 7 inches of snow up there now. He can have it all if he wants it.
We've got plenty there in the deep freeze, he can have that too.