A just machine to make big decisions

Programmed by fellows with compassion and vision

We'll be clean when their work is done
We'll be eternally free yes and eternally young

What a beautiful world this will be
What a glorious time to be free

On June 26, 2000, then-president Clinton announced that the working draft of the Human Genome Project had been completed. He told the world that the work being done by geneticists would “revolutionize the diagnosis, prevention and treatment of most, if not all, human diseases.”

The president wasn’t alone in his enthusiasm and optimism: Francis Collins, the director of the project, predicted that within ten years the task of genetically diagnosing diseases would be complete and that five years after that we could expect treatments based on those diagnoses to become available. “Over the longer term, perhaps in another 15 or 20 years . . . you will see a complete transformation in therapeutic medicine,” was how he put it.

Well, it’s been ten years and as the New York Times put it, “A Decade Later Genetic Map Yields Few Cures.” The primary goal of the project, which was to discover the “genetic roots of common diseases such as cancer and Alzheimer’s and then generate treatments,” remains “elusive.”

Actually, “elusive” is a “glass half-full” way of putting it: “after 10 years of effort, geneticists are almost back to square one in knowing where to look for the roots of common disease.”

Instead of the genetic roots of common diseases and treatments, what we’ve gotten are “discoveries of disease-causing mutations in the human genome” that, by themselves, only explain a “small part of the risk of getting the disease.”

For instance, a study involving genetic variants linked to heart disease found that, when it came to predicting who would actually get heart disease, “the old-fashioned method of taking a family history was a better guide.”

After all the hype, we have learned that the “genetics of most diseases are more complex than anticipated.” Harold Varmus of Sloan-Kettering and, soon, the National Cancer Institute, summed it nicely: “Genomics is a way to do science, not medicine.”

Thus, on the living up to the hype scale, the Human Genome Project ranks somewhere below Stephen Strasburg. Is it, therefore, a bust? How does it compare to, say, Tony Mandarich?

It’s not a Tony Mandarich, not by a long shot. While it hasn’t had and may never have the impact we were expecting and hoping for, its impact has still been considerable. It has revolutionized biology and related scientific disciplines. Genomics has transformed – or at least could transform – the way people see themselves for the better. My favorite scientific finding of the last twenty years or so has been the lack of genetic diversity in modern humans: a single troop of chimpanzees may be more genetically diverse than the nearly 7 billion people on Earth. In Chris Stringer’s words, “relative to many other species, we’re almost clones of each other.” That’s really cool!

There are other potential consequences that I wouldn’t describe as “cool.”

While genomics has so far proven unable to actually cure diseases, it does provide us with the tools we need to prevent them by identifying those who genetically at-risk and, not to put too fine a point on it, preventing their birth.

Case in point: the recent announcement that researchers had “uncovered dozens of previously unknown genetic mutations that contribute to autism in children.” While some of the mutations are inherited from the parents, other “tiny genetic errors may occur during formation of the parents’ eggs and sperm, and these variations are copied during creation of their child's DNA.”

Notwithstanding headlines to the contrary, this research does not herald a “cure” for autism. If anything it augurs the opposite: researchers found that “every [autistic] child showed a different disturbance in a different gene.” These “private genetic mutations” make “may make it more difficult to design drug therapies that work across a wide range of autistic spectrum disorders.”

But if a “cure” is no closer than it was before the findings were announced what is closer is our ability to genetically identify people at a high risk for autism in utero.

And what will we do with this information? Do you really have to ask? We will kill to be kind.

That’s what happened to people with Down Syndrome. The combination of amniocentesis and abortion-on-demand put these folks on an “endangered humans” list of their own. Ninety-two percent of all prenatal diagnoses of Down Syndrome are followed by an abortion.

Only naïveté and/or sentimentality would lead you to believe that things will be different with prenatal diagnoses of autism, or even a predisposition to autism. After all, prospective parents of children with less-challenging genetic prognoses than autism abort their unborn children a majority of the time.

It’s not hard to understand why: our less-than-discretely-charming bourgeoisie have adopted a kind of unofficial “one, at the most two, child” policy. This ratchets up the pressure on the unborn Ethans or Emmas to be as close to flawless as possible – mom and dad are only going to do this once, twice at most. While no genetic test can determine, in utero, if Ethan and Emma are going to fulfill all of their lofty expectations, it may be able to tell you if they definitely won’t.

Everyone who believes in telekinesis, raise my hand. Everyone who trusts people not to avail themselves of the edge provided by what Edwin Black calls “newgenics” lend me your ATM card and your password.

In a more charitable vein, a child whose dependence may extend well the beyond the teen years and whose needs can be exhausting is a daunting prospect. Every parent of an autistic child can tell you about the kick-in-the-gut feeling that accompanied the first time they heard the word “autistic” used in connection with their child. And we had already known and loved them for three or so years! I can’t imagine what I would think hearing that about a child I had never seen.

Then there’s the expense. While autistic kids generally don’t have medical expenses that are out-of-the-ordinary, children with other genetically-based disorders often do. Factor in the additional expenses of special education, and assisted living, whether paid for by the family, the state or a combination of both and, to be completely honest, the cost of honoring the sanctity and dignity of human life can be expensive.

Everyone who believes in telekinesis, raise my hand. Everyone who thinks that these expenses won’t be a factor in deliberations about what to do with the new genomic knowledge, sign this power of attorney I’m about to hand you.

Again, the treatment of people with Down Syndrome provides a glimpse of this genial dystopia: prospective parents face pressure from doctors and insurance companies to undergo genetic screening. The economic reason is simple and doesn’t require a terminal case of cynicism to understand: the least-expensive way to care for people with special needs is to prevent them from being born.

I call it a “genial” dystopia because, unlike China, for instance, the coercion will be subtle, so subtle that even sensitive souls who went out of their way to see My Name is Khan and cried as they watched Jason McElwain on YouTube will see the logic and even kindness in getting tested and acting on the results.

We won’t need “death panels” because our sentimentality, self-righteousness, and unexamined assumptions about what makes life sacred and worthy of respect will make them unnecessary. Our ability to draw distinctions without differences will come in handy: targeting the weak outside the womb, Nazi; inside the womb, the heart of liberty. Life and death decisions made by government, totalitarian; made by the “private sector,” liberty in action, not to mention good for the bottom line.

That’s a result I’m pretty sure won’t be elusive.

It’s a beautiful world we live in,
A sweet romantic place,