John Sundman responds to critics of his articles "How I Decoded the Human Genome" and "One Vote for the New Eugenics."


[Read the letters.]

It is apparent from the letters published in Salon in reaction to my article and from those that I have received privately that I did not write the article I had intended to write or at least that I failed to make clear certain points that are important to me.

First, when I said that I did not want to live in a world without people like Helen Keller and my children, I did not mean to say that I would not want to live in a world without disabled people or people with severe illness. My concern, however, is that disabled people, already devalued and marginalized by society, are at risk of further marginalization and devaluation as a paradoxical consequence of scientific research undertaken with precisely the opposite intent. Helen Keller gave great gifts to humanity. What would have she been able to give us had she been warehoused and abandoned like so many others with disabilities like hers? We are already seeing backlash. I fear it will get worse.

Second, when I made the distinction between infection by toxoplasmosis and bipolar disorder, it is not because I believe that the genes my daughter was born with are somehow sacred; it is because I don’t know how much of her vibrant, artistic, perceptive, bold personality is related to the same genes that cause her, sometimes, so much pain. One of her high school teachers once told me, “In my 35 years of teaching, your daughter is the one student who brought me the most joy.” I cannot tell the baby from the bathwater. Can anyone?

My concerns are, (1) Who are the stewards of bioinformatic technology, and to what ends are they, or we, steering it? and (2) How do we create and maintain a society where “all people are created equal” regardless of what’s in their genes? I don’t have answers to either question.

I’m dismayed that every letter touches somehow on eugenics. I thought Jim Kent’s comments and the notion of Saddam Hussein as a script kiddie were equally interesting.

Finally, I would like to go on record as being pro choice.

– John Sundman

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