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Sunday, Jul 12, 2009
"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."
Oct 24, 2003 | [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.
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.
-- 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.
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.
-- 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.
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.
-- 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
