An Arm and a Leg

A report published by the National Academies of Science, Engineering, and Medicine this week has received less attention than perhaps it deserves. The report, titled “Human Genome Editing: Science, Ethics, and Governance” explores the emerging reality of the not-so-distant future of addressing certain human diseases by editing specific genes in human embryos, egg and sperm cells. This level of medicine has heretofore been left to the imaginations of science fiction writers. But now, it looks like we are peering over the edge of that boundary between imagination and what looks to be a stark reality, and our notions of what is ethical and “right” might get shaken up just a bit.

What’s truly significant here is not only the ethical consideration, but more so the vision we procure from our daydreams and projections of our own future, like the distorted albeit detailed view through the peephole in the front door. Predictions may or may not come to fruition but will surely fuel the debate about humanity’s path, if not solely for the benefit of fleshing out our nightmares. The first thing one might conjure up is basically the plot of the 1997 film Gattaca, in which we see a future where designer babies can be ordered like you would a pizza, customizing your offspring to be taller, smarter, and stronger. This is the primary concern of some who believe we are looking in the face of pure eugenics, a pseudo-scientific study intent on reshaping the human race, or segments of it, into an ideal species, one not only disease-free, but perhaps also free of any tendencies toward obesity or depression. A “perfect” human, if you will.

If scientists were to, say, focus their energy on eliminating AIDS and malaria, populations in Africa would be the first to benefit. But something tells me altruism will lose out to economics, and companies will work to attract the rich, who will be more than willing to pay any amount to “build” a new generation of super-humans. With the rich now being relatively free of diseases like cancer and Parkinson’s – which used to be more of an equalizer – now only the poor will get sick. Optimists among you might see possibilities, but this new world where you can guarantee your children and their children will never suffer from devastating diseases is sure to render a class society, where now you can identify the second-class by their raspy cough or their hair loss due to chemotherapy.

Because, you see, if only poor people are the ones to suffer from human frailty, then where is the incentive for drug companies to do anything about their plight? Indeed today even the wealthy can suffer from schizophrenia or rheumatoid arthritis. But pharma can make a pill for what ails you, and people like Martin Skreli can capitalize on the remedy, marking up the price for a life-saving drug by 5000%. Not only are the poor going to be further marginalized, but even non-GMO humans who are not sick could still be discriminated against. Since nearsightedness could be eliminated, the world might become harder to navigate for the normal-sighted as text becomes smaller, and sight requirements become more stringent. Could we design a dynasty of athletes? Is tweaking some genes that control memory like cheating on a test?

The gene or gene-cluster that is responsible for addictive tendencies might be switched off in a family with a history of alcoholism. That is not to say that no one would develop a drinking habit, but we don’t know enough at this stage. The medical ethics community strongly emphasized that genetic manipulation would only be okay for preventing devastating and untreatable illness, as a quality of life issue, or for humanitarian interests. The ability to pick and choose the attributes of future generations is strongly frowned upon, but who polices the world of genetic research?

I fear for a future where someone like me, myopic with a slight attention problem, would be shunned by society, now having to exist in this Island of Misfit Toys we call “normal”. But if you were to eliminate aberrations in the future gene pool, the Stephen Hawkingses and Franklin Roosevelts of the world might never materialize. Some of the greatest examples of humanity have been flawed, frail individuals. Should we abandon that possibility for the hope of eliminating those frailties? Doesn’t my nearsightedness and my ADHD make me a better person because of those flaws? What sort of character would I possess if I never had to struggle?

Editing genes might look very attractive when you are faced with the seemingly insurmountable hurdle of finding a cure for cancer. Don’t get me wrong; I would be the first to congratulate the scientist who announces that he or she has accomplished that. Get rid of heart disease and diabetes, by all means. But take it one step at a time. Once we have “cured” something, let us take stock of it and all its ramifications. Maybe start with AIDS. Then cancer, followed by heart disease. (Some would argue that heart disease kills more people, but it is preventable in most cases.) It worries me that gene editing to prevent something might make a super-infectious pathogen possible. I expect there have been many lab trials, and any human trials might be quarantined just to be safe. In any case, it’s scary as hell, but people are dying. And this is not so far in our future. I predict within the next ten years a child will be born who possesses altered genes. This person will look like any one of us, maybe a little closer to perfect. Then it begins.

Read the NPR story for more



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