Letters

"This nut job would be thrilled to be the last of her kind": Readers respond to John Sundman's "How I Decoded the Human Genome" and "One Vote for the New Eugenics."


Salon Staff
October 24, 2003 11:30PM (UTC)

[Read Part 1 and Part 2.]

I'd like John Sundman's readers to know that some "genetic freaks" take a very different view of the human genome project than the one he presents.

For 11 years, I suffered from crippling childhood mental illness. Although my symptoms have been under control for over a decade, and I'm now living a happy and successful independent life, I applaud attempts to eliminate suffering like mine from the human experience.

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If a prenatal test revealing the tendency to develop an illness like mine had existed when I was a fetus, I probably wouldn't have been born. So what? My parents would have had a different child instead -- one just as likely as their diseased fetus to grow into a loving, talented, creative individual, and one far less likely to spend years in agony and die young. What's so terrible about that? In fact, what's the downside?

If, thanks to genetic testing, "nut jobs like [me] disappear from the earth," I'll view it as a human triumph comparable to the elimination of polio and smallpox. Unless such a test is developed, I will not have children. This nut job would be thrilled to be the last of her kind.

-- Hanna Stotland

"In our culture, now more than ever, the beautiful are gods. And the disfigured, paralyzed, blind, deaf and mentally ill are at best an unavoidable nuisance, at worst an intolerable, 'politically correct' burden on the rest of us decent folk."

Has it ever been very different, really? The most beautiful have always been the most marriageable (right after the richest, anyway). Long ago, disfigured babies were left exposed to the elements to die, and the paralyzed, blind, deaf and mentally ill (if not tortured by attempts at exorcism) were stuck begging for whatever they could get on street corners. Not long ago most of these people were shut away in asylums. Our knowledge and technology may sway people's actions a little one way or another, but they don't create human reactions to life and the world around us.

There have always been and will always be people who believe we should help each other out and other people who believe everyone should pull exactly the same amount of weight in society. We will always have to fight to find ways to help the former because the world almost always seems to make things easier on the latter. The Human Genome Project isn't the problem, humans are.

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-- Suzanne Lander

John Sundman claims that by the standards of what he calls "the new eugenics" his own children wouldn't have been born, while insisting on his kids' full humanity. Then surely Sundman and his wife would have decided to have them, even if they had known that their children's lives -- and theirs -- would be challenging. There are people who are willing to parent severely handicapped children. As the exhausted parent of a perfectly healthy, very wanted toddler I can't imagine pressuring someone to make that choice.

-- Ina Rimpau

I grow my own organic herbs. I make my own beer and my own whole wheat bread. I happily wait all year for the late summer tomato season when I can slowly sample all the different organic heirloom tomatoes that show up at my local farmers' market.

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I'm also a highly skilled molecular biologist who is still a practicing scientist. Throughout my graduate school years I regularly put together strings of DNA that originated from several organisms -- firefly, human, bacteria and viruses. These were grown in bacteria and ultimately injected into human cells growing in culture for study. Huh. Guess I must have some kind of a God complex.

Although these articles were well-researched and well-written, they carried an implication that science and nature are somehow mutually exclusive. Implying that scientists are somehow inherently anti-nature is completely unfair. The accusation that we have underdeveloped morals and never think twice about bioethics is insulting.

The fact is that we do happen to debate bioethics quite a bit. For example, my best friend from graduate school and I completely disagree on the issue of genetically modified foods. The difference I've noticed between arguing with other scientists and arguing with nonscientists about bioethics is that, contrary to popular stereotypes, the scientists tend to be much more respectful and non-judgmental about differences of opinion.

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-- Erica Dahl

Both parts of the "genome" article were very informing ... In fact the way Sundman introduces his wife, son, and daughter is done in an exceptional and enticingly clever way. (I was so impressed that I "previewed" the article in OSX and saved it as a PDF for posterity.)

What I feel the article misses out on is the different forces at work in forming a person. Our identities are formed by our genetics, by our physical location in space, and by our social environment. A fourth we might add is the spirit manifesting through all these levels.

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There is no doubt that genes are powerful, but in psychology there is the idea that those who are, for instance, genetically predisposed to bipolar disorder also respond to environmental triggers that set the extreme behavior off. Evaluating this from just a genetic level obfuscates the issue.

Behavior isn't defined solely by genes.

We'd probably do well with a further understanding of the "cause and effect" relationships between genetic manipulation and its impact in the world. There must be a way to study these things safely. I'd like to see us work toward that in an open way.

In the end, these discoveries are all part of something far older then science. Something that will continue on and on -- the endless dance of the cosmos.

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-- Siri Dhyan Singh

Mr. Sundman's article (Part 1) touches on what is possibly the defining moral debate of our era. I am profoundly conflicted about it -- as a Catholic, as the sister and niece of men with congenital neurological defects, and as a mother. I do think that parents who choose to terminate pregnancies due to negative genetic test results are not necessarily holding out for a perfect child. Taking responsibility for a sick or disabled child has enormous implications for parents' finances and family life. A parent who commits to caring for a high-needs child is also taking time and care away from his or her other children. Until you have lived this reality you should not judge other people's decisions. But isn't life, all life, sacred? Abortion, euthanasia, and the death penalty -- all these debates fall silent in the face of that principle. I don't know that I have the courage or the clarity to hold that principle. I certainly feel tremendous respect for people who are confronted with it, and find their way. And I thank God every day for my healthy baby.

-- M. Walker

In response to John Sundman's article "How I Decoded the Human Genome" I would like to say the following:

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First, I thoroughly enjoyed Mr. Sundman's writing style. I look forward to reading more from him in the future.

Second, in response to the initial question of whether or not mastering our DNA gives us the right to decide if his children should never have been born, I believe that the ethical and legal groundwork has already been laid down with respect to the justice system's interpretation of choice in abortion. While genetic manipulation of a developing fetus will have its own unique issues, a logical extension of abortion law would dictate that the mother be the one given the power to make that decision.

Third, with respect to evolution, to ponder if mankind will ever be able to control the "force" of evolution is to misunderstand what evolution is. Evolution is not a force to be controlled, but merely life's never-ending response to living in the physical world. We cannot control mankind's evolution, or any other creature's, because evolution is bigger than the human race, at least as big as this planet, maybe as big (or bigger) than the universe itself. Whatever creatures we create will merely be offshoots of the evolutionary tree, and while we may wind up as just another offshoot ourselves, future history will certainly look back on this period (if it bothers to look at all) as just another blip on the long, merciless road of time.

What concerns me more than the hubristic idea of evolutionary control is the placing of our genetic code under corporate control. Corporations are not human, nor do they have human motivations, and placing something as uniquely human as our genetics in corporate hands will certainly have inhuman consequences. Genetic manipulation is the most powerful and dangerous force ever contemplated by man; even atomic energy pales in comparison. And for the same reason we don't allow corporations to own atomic weapons, we shouldn't allow corporations to own our genetic code.

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In conclusion, though, I greatly admire Mr. Sundman's devotion to his children, and am happy they can make a life for themselves. We may be able to factor the genetic code, but we will never be able to quantify the human spirit.

-- Charles Snead

I just finished reading John Sundman's article(s) concerning DNA.

Mr. Sundman presents a rather polarized "all or nothing" argument concerning human genetic engineering. I would argue that there is, in fact, a third choice, and that choice is ... choice.

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One of his main concerns appears to be that this technology will be used to banish the genetically deformed and genetically handicapped from the world.

This fear is unfounded: genetic counseling, prenatal testing, and a technology called "abortion" has been available for quite some time, yet (for example) people still choose to give birth to children with Down syndrome.

After all, that's their choice.

(Whether or not an individual with Down's would choose to be born with or without Down syndrome, however, is another question.)

-- Steve Muise

Try as I might I can't understand Mr. Sundman's distinction between the suffering caused by a pathogen -- toxoplasmosis -- and the suffering caused by a genetically influenced disease -- bipolar disorder. The distinction seems to endow DNA with some sort of supernatural judgment of "How Things Are Meant To Be." In truth our genome is just one of many incredibly complex biochemical systems that combine to sustain and reproduce life. DNA and the genome are not communications from the Platonic realm. They are just as susceptible to chance and bad luck as the biochemical systems in his son that were damaged by toxoplasmosis.

Suppose we learned tomorrow that bipolar disorder was not genetically linked after all, and that it was caused by exposure to an industrial toxin in utero. Would a campaign to eliminate or counteract the toxin be disrespectful of his daughter's humanity?

-- Charles E. Grant

John Sundman's article certainly made me think, and raised a lot of questions. Too many, maybe. I found his article in need of editing -- it was long and rambling and made a lot of points without seeming to tie them all together. In the end, he goes in a monologue that sounds more like an editorial, raising even more questions that he hadn't even covered in the article.

I admit this is a complicated topic, and there are many, many unanswered questions. There is no way to stop DNA research, just as there is no way to stop cloning or nanotechnology. No matter how scared, skeptical or "crackpot" the rest of us are, there will always be enough people hungering for new knowledge in the name of progress.

I carry a "defective" gene. I walk with a limp, my joints are often a source of pain, and I can look forward to requiring hip replacement surgery sometime in my 50s (I am now 32). As a child I often felt outcast and other children made fun of me for my limp. I am sure that I have been shaped by my experiences -- I am introverted (which means that I am sometimes shy, which I'd rather not be, but also contemplative/philosophical/intellectual, which I'm OK with). I am also stronger for it. If I have children, there is a 50 percent chance that they will have the same condition, but I would not abort them if tests proved that they had it.

I don't know if I would do the same if tests showed my child had Down syndrome, or would be otherwise mentally or physically handicapped. I know only that one can live quite happily with my condition. Perhaps others, who don't have my experience, would rather have a "healthy" child. Mr. Sundman knows from his experience that raising disabled children is not the end of the world. And although I too fear a world where nobody is "different," what happens when having a "different" child is a choice? There were times when I hated my parents for having given birth to me. Can I morally make the decision to "curse" a child with a handicap? How bad a handicap can I/my child tolerate? I think we can only answer these questions for ourselves. Life was perhaps easier when we had no choice but to accept the life fate or God or whatever gave us. In this brave new world, we no longer have that luxury.

-- Stephan von Pohl

Mr. Sundman does us a service by presenting the rational, careful side of the gene-modification debate. I would, however, ask him to restrain his tendency to lapse into gee-whiz folksiness, as if to establish his bona fides as a "real" person even though he's talkin' about all kinds of high-falutin' scienterrific stuff. It was obnoxious in Time magazine through c. 1965, it was downright embarrassing for Ezra Pound, and it shows little respect for his audience.

On a different note, I would suggest that it's incorrect to equate the presence of great lessons potentially available via the experience of suffering with the desirability of imposing those lessons on future people ... consider Shel Silverstein's boy named "Sue" -- -it sure did a lot for him, but he had the sense to know that it was something to be avoided in the future.

To say that preventing handicaps (to use the proper word) in the future is to prevent some people from existing is to equate people with their handicaps. The world is vast and wonderful enough to provide many a painful lesson to our futurity, regardless of how much we're able to prevent kids from going blind or risk their heads exploding. If ordinary unhappiness will have to suffice, so be it.

Finally, although I have sniped, thanks again for the article. I hope Sundman's family will be well, and that he can get the hell out of manual labor as soon as possible.

-- Michael Turyn

Although I have my misgivings about biotech, the "right to be born" argument is one that I don't find compelling at all. People make decisions about family planning all the time. At the stage at which many genetic problems would be able to be detected in the future, you have a collection of cells or perhaps in the far future only an egg and a sperm. Perhaps you will even be able to correct the problem in the womb. Who knows.

If you are going to argue that everyone has a right to be born, why stop at genetic engineering. Birth control, even based on timing of a woman's cycle, prevents children from being born.

-- Celia Clause

Perhaps next Salon can commission an article on abortion in which a mother interviews her children, who go on record saying that they are glad they weren't aborted. This article could also feature the famous turnaround of Jane Roe/Norma McCorvey because hey, if somebody changed their mind from one side to the other, we should all pay attention. Surely this is the basis on which emotionally charged issues should be decided.

-- Sally Williams

A caveman learned to make fire and another decried the fall of civilization at the hands of cooked meat. So it has been and so it will always be. Debate is a necessary element of a responsible society; fearmongering, however, is a return to a darker time where we feared the boogeyman. Education is the key to making good decisions about the future of our race, not hand-wringing and jumping at shadows.

The coming breakthroughs in genetics will change us. They will free us. The burdens of disease and infirmity will fall away. Death will hold no dominion over us. We will explore the very nature of existence, what it means to be alive, sentient, human. The future will come and it cannot be stopped or hidden from. We must approach it with courage and, yes, vigilance, but never shrink from it in fear. We are blessed to live in a time where we have the power to do so much good, to turn away from such an opportunity out of ignorance would be a crime against humanity, present and future. We have a duty as citizens of this world to seize our destiny and make it as we see fit, because it will be made. Whether it be in our interest rather than that of the rich, the powerful or the mad, is up to us.

-- Ramon Iovin


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