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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The Enemy Family

Sometimes I hate people.

I recently submitted DNA samples in a project to discover our human ancestry. There are several organizations out there that will, for a fee, analyze one’s DNA and provide the customer with information about his or her genetic past. The results will allow me to see into the distant past and possibly discover where my family came from and how we got here. Many people have paid for this analysis to be performed on their cheek swab material. Evidently, enough genetic material may be collected by scrubbing the inside of your mouth for 45 seconds to give scientists a detailed picture of what you’re made of. As it turns out, genetic researchers, along with historians and anthropologists and archaeologists, have traced human migration patterns to a precise spot in East Africa. Over a few hundred thousand years, Homo Sapiens moved from there to all points on the globe to where we find ourselves now.

It is clear to me that my ancestors came from Europe. One path will undoubtedly trace back to England, then further, to Central Europe and beyond. Another path will connect with the Iberian Peninsula, then to North Africa. Perhaps. But recent discoveries have identified a significant amount of Neanderthal DNA mixed in with some of us, the ones who descended from early Europeans. It will therefore come as no surprise to find 3-4% Homo Neanderthalensis in my sample, which is about average for people of European descent. It is much lower with Asians, and practically nonexistent among Africans.

Neanderthals have had a pretty negative reputation since first appearing in popular culture. They’re seen as ogre-like cave-dwellers with low intelligence and a knuckle-dragging posture. But a lot more is being learned about them and how it is they vanished. Well, they didn’t disappear entirely, it turns out. They are us (some of us, anyway.)

I don’t know anything about early humans, but I like to think part of who I am, my psyche, my physical attributes, I can trace back to those Neanderthal roots. Nevermind that I have a natural talent for music. I don’t know where that comes from, and I don’t know if it’s necessarily an inherited trait, but many members of my family have similar talents.

I was raised a certain way, and my family is not prone to violence or aberrant behavior (although there have been a few alcoholics). As a man, I am, however, fiercely protective, especially where my wife is concerned. When she feels threatened by someone, my instincts start working through my primitive components, and I become angry. No one causes my wife more harm more than her family.

My wife’s siblings are all very protective of her, especially her brothers, about whom I should refrain from drawing ancestral conclusions, but there are a lot of people who would be quite surprised to find that they have sub-Saharan African genetic roots. But the main problem we have with our families is not with siblings, but with in-laws. It is for this reason that I am a proponent of arranged marriages. Who better to pick your mate than the people who know you better than you know yourself? But I digress.

These in-laws, ex-in-laws, as it were, of my wife’s siblings, are not bad people, but they are hurtful and cruel. It is their upbringing, I suppose. Just as most people would find beating their children repugnant, they see it as part of life, a necessary affliction. Their parents abused them, therefore abuse begets abuse. But say anything disparaging about their family, no matter how horrible growing up was for them, and you will find yourself ostracized if not assaulted both physically and verbally.

It is enough for me to beckon my Neanderthal 3% and smite these people with the efficiency and thoroughness of the berserker. I feel a little like Bruce Banner, struggling to hold back this juggernaut within me. In reality I have nothing of substance to administer as a rebuke to the injury brought upon my family. And I consciously know that violence is not an answer. But there is rage, Neanderthal notwithstanding, inside me knowing how my wife is being punished for no reason.

People like to think that, above all else, family is the most important thing. Family trumps everything. Well, kind of. The Civil War rent families beyond reconciliation. Brothers fought brothers. The entire country was ripped apart. Family is not the strongest bond, it appears. It is my opinion that one’s family is made up of the people who care most for us, those who will stand by us, who will be with us no matter what we’re going through. These “relatives” of my wife are not family. They will not come to our aid if we are in need. They will not comfort, they will not defend us. They are the enemy.

I know how to treat enemies.

My Neanderthal ancestors probably had similar problems with in-laws. But their solution was probably a lot more gruesome. My solution is to cut them off entirely. Not so easy for my wife. And the struggle persists. But we do have family. Real family. Our friends who have always stood with us, who would travel halfway around the world just to see us. That’s family. Anthropologists like to remind us we are all one big family of humanity. Well, they haven’t met everyone, have they?

 

Happiness is …

Many years ago, when I still watched broadcast television (oh, you can probably guess my age because I say “television” and not not “TV”, and I publish in a serif font, and I know what that means) I was watching an episode of “Frasier” when Niles, played by David Hyde Pierce, asked the title character if he was happy. Frasier then spent the entire episode exploring whether he was or was not happy, and how anyone could be happy, or that happiness existed.

I’ve wondered this myself. Many people tell me I am happy, but I don’t know how they could possibly know this. My wife insists that anyone who laughs out loud in his sleep is, deep down, a happy person. She has known me longer than most people on the planet, and I trust her assessments of most things, notably, my choice of attire on a contextual basis. “Does this look okay to you,” I ask.

“Where are you going, and I’ll tell you.”

People like to assume that happiness and joy are intertwined. Most dictionary definitions of happiness use words like “contentment” and “satisfaction”, as well as “joy” and “pleasure”. We say things like, “I’m happy to meet you” which is interchangeable with “pleased to make your acquaintance.” (That last one is probably a little old-fashioned for us 21st-century types.) I find myself saying that I’m “pleased” lately, but that’s probably because I’ve been watching a lot of BBC on Netflix, and I tend to pick things up from people around me or stuff I hear. Right now, I’m hearing Matthew Perry speaking these words in my head as I’m typing them, because I just watched an episode of “Studio 60”. (Great show, by the way.)

Am I happy? It’s a hard question to answer, because we’re told all our lives that we should be happy, especially in ads. Fast food ads are the most pervasive. They show really attractive kids enjoying life in a slightly less-than-gentrified ambiance. It’s like everyone wants to live in the East Village. Ask the average person if they’re happy. They’ll probably jump right to that Bobby McFerrin song in their heads. “In every life we have some trouble,” the song says, but tells us not to worry, and to be happy. If it were only that simple.

Where Everybody Knows Your Name

But maybe that’s the secret. Just will yourself to be happy. Like the song says, none of us is without suffering. This is a concept I first came to understand in Catholic school. We must all “take up our cross” and bear it, as Christ did, so the teaching goes. In truth, everyone will suffer in their lifetime, some more than others. This was so commonplace in times past that people looked for some cause for their suffering, be it as punishment for something they or their parents did, or as a curse, being playthings for the gods, we.

No one is immune from human suffering. And yet, people are happy, some of us. McFerrin’s lyrics say we should just be happy no matter what is happening to us, because, well, shit happens. Life, it turns out, is unfair. But we’re admonished for complaining too much. You may have heard the saying, “I used to complain that I had no shoes, until I met someone who had no feet.” What we’re to take from this is that we shouldn’t complain because there’s always someone worse off. Well, this kind of pisses me off, and it makes me want to complain further that I had to listen to this horrible advice. My answer has been that everyone has a right to bitch about their particular degree of suffering, even though they are destined to be outdone by the next miserable sod.

Many people equate wealth with happiness. The opposite seems to be the case, as a report that draws a link between expensive weddings and shorter, unhappier marriages states. But poverty is no picnic, either. It’s just that having heat and a fast internet connection helps in a lot of ways, and I rarely complain about it. Money can make you comfortable if not happy.

There’s always going to be something to make us miserable. I have my own share of trouble, but I think I am happy. You would have to catch me at the right moment before you ask, but for the most part, I am content, and I have joy in my life. I know people who could never say that, and I would probably declare them unhappy, but I don’t know what’s inside these people. I only know what I see on the outside. Sometimes, I am not pleased with things. I rant about how everyone seems to be meth addicts, and I would be okay if certain places on the map just were not there anymore. But I laugh often, sometimes in my sleep, and I sing when I’m feeling good, or when I’m being paid. Am I happy? Generally, yes. I wish more people were.

 

Save Our Souls

I was pretty depressed last week. We recently lost a family friend, and even though no one wanted to talk about it, we knew she had suffered a lot with substance abuse and its complications. It was a tragic end to a life of pain and grief. My wife had been one of the last people to contact her, and she had always been there to support her and comfort her. Her death came as a shock, but not unexpected. Still, it hurt a lot of people.

I started my week feeling like there was no point to anything, because we all die, and we all leave a trail of grief in our wakes. I had recalled a passage in the Bible where Jesus was preaching to a crowd of people about how we should treat one another. I’ve always felt that this was important, but now I saw the futility of our existence. What was it all for, I pondered. It was hard to see the point of anything.

Jesus stood on that hilltop and said, basically, feed the hungry, clothe the naked, visit those in prison. Other passages instruct us to treat others the way we would want to be treated. But I thought, “why should we bother?” People were going to die anyway. If I fed someone, it’s not going to save them, but merely extend their existence for another day. I imagined that I might have a conversation with Jesus on that hilltop. I would say, “I can feed someone, but that’s not going to help them get out of poverty. And I can clothe someone, but am I really helping that person?” What is our one drop of compassion in the ocean of suffering going to amount to?

I considered how he might reply. It was simple, really. The point in bringing light to a world of darkness, to be that one small voice in the mob, where it seems no one cares, and everyone works against you, is to ease the suffering of an individual in order that your act of mercy translates into that person being just that much more compassionate. The ripple effect would change the world for the better. If we do nothing, we add to the suffering. We are either part of the solution, or we are part of the problem.

This is not to say that I think people who do nothing or who do evil are damned to go to hell. I don’t think there is such a place. And I don’t know what happens to us when we die. All I know is that we live in a world of immense suffering and pain. Easing that suffering may not save a life, and it might not save you, but it echoes beyond the moment and carries on to the next encounter, be it tomorrow or a generation beyond. In a way, we are all changing the world, one atom at a time. We waste our lives arguing over who is right or how to make more money or what people should think. I find that there is value in being kind to people. I have visited people in dark places in their lives, and even though I may question what good I am doing, I know that I will always remember when someone has paid a kindness to me. And the point? I will have less suffering as a result, and I will pay it forward. Hopefully so will the next person.

Is this going to save us? I don’t know. But while we are all in this thing together, why not make the ride a little less bumpy. Recently, someone caused a lot of suffering in South Carolina. Some of the family members of the victims came forward to express forgiveness for the alleged shooter. I am surprised when I see something like this. I don’t mean that I don’t expect people are capable of forgiveness. I just find it surprising in comparison to the way most people behave without having been injured. Sometimes I am completely disgusted with my species, and I lose my confidence in our right to survive.

We place ourselves above other creatures by claiming we possess a soul. (I’m not convinced we’re the only ones.) Perhaps the trajectory of our lot is a point where we will become an enlightened race, not burdened by pettiness and jealousy and greed and all the other characteristics that are attached the dossier of our beings. Once we can shed those and live up to our potential, who knows how we will evolve. We seem to be somewhat spiritual, so it seems our development will progress that way. Or we’ll become purely intellectual beings. Who knows. We can only get where we’re going by discarding the unwanted baggage. I suggest we start by not being colossal assholes to one another. I’m a work in progress.

None of us is perfect. And I’m as far from it as the next person. Well, good luck out there. Don’t be a prick. Take care of the needy. Show mercy. Send a Thank You card when you receive a gift. (That last one’s Emily Post, not Jesus Christ, but you probably knew that).

Do Not Be Afraid to Tell the Truth

I just listened to a radio piece about a young woman who died from a heroin overdose. In the story, her father was explaining why he went public with her cause of death, posting on Facebook and listing that information in her obituary. The father, Tom, told Melissa Block from NPR that he could not understand why anyone would not want to help by telling the truth, letting the world know that people are dying from drug addiction.

I have lost a family member to drug addiction. We’ve seen relatives and friends die from cancer and heart disease, and no one raises an eyebrow when that information is shared. “Oh, I had an aunt who died of cancer,” they will say. But tell them about a 24-year-old who died of a heroin overdose. Suddenly they see that person as a criminal. That’s the problem with the War on Drugs. Since 1971, more money has been spent on criminal enforcement than on treatment. With so many “drug offenders” crowding prisons, it is obvious that tactic hasn’t worked.

Drugs, including legal ones like alcohol and tobacco, when abused have the potential to destroy you and your family. I have seen what happens to families where someone has an addiction. Its effects last for generations and beyond. Naturally, many people can control their use of drugs. That’s not to say that you could spot an addict. Many addicts easily hide their addiction. An alcoholic doesn’t have to be a drunken fool lying in the gutter. He or she could be sitting next to you in church. They just happen to have a disease, like diabetes or cancer. But like any disease, going untreated can result in death. I’m not kidding here.

Tobacco-related deaths far outnumber deaths due to alcohol abuse, according to the Center for Disease Control and Prevention. But there are still too many drug-related deaths, most of which could be prevented with proper treatment. The girl in the radio story went to rehab repeatedly. But it wasn’t enough. The lesson to be learned here is to avoid drugs as much as possible. If you decide to drink, recognize when you’ve had too much. If you find yourself getting drunk every time you drink, seek help. As for heroin and other hard drugs, just do your best to stay away. If your friends try to get you to use them, find new friends. You know what they do to people. And anyone who does not care about you is not your friend.

I know some people who abuse drugs. I wish they would stop. I know that nothing I say will change their desire for that high, and they have to get themselves some help. Tom, the father in the story, talked about everything he tried to help his daughter, and he tried everything. That girl was blessed but unfortunate. She had a family who cared about her, but also a dealer wanting to make a buck. I suggest you listen to the story, and if you know someone struggling with addiction, tell them to get some help. I am through with holding my tongue. If people don’t want to hear what I have to say, they can walk away. I don’t care whom I offend. Your life is precious, and you are throwing it away. Someone ought to make you feel really, really uncomfortable about this.