susan cohen

The American Library Association's journal Choice has named "Normal at Any Cost" an Academic Outstanding Title in 2009. The honor went to fewer than 700 titles out of some 25,000 published, and is based on the importance of a work as well as the way it's written. Basically, these titles are those recommended as essential for all undergraduate library collections.

We are honored, of course, and hope that it will lead to getting this story into the hands of more undergraduate students -- especially those who will become doctors, but also young people who will be making decisions in the future about their own children.

Today, as well, a successful gene therapy treatment was announced that apparently cured a rare degenerative brain disease in young boys. Nobody can doubt that this is a breakthrough and a triumph. Without spoiling the moment for those families who now have hope for the first time, I can't help thinking about the early celebrations over making dwarfed children grow after decades of medical failure. And I wonder whether it will be years, or decades, before gene therapy is offered for enhancements rather than cures.

Been reading about glowing marmosets, drug-producing goats, and speaking mice. Not of the Disney variety, but created in laboratories in the pursuit of science.

There is a whole trangenic world out there -- a research community that takes genes from one organism and inserts them into another. (My favorite link for scientists is the one called: "Have They Made Your Mouse Yet?") Major medical institutions all have trangenic centers churning out chimeras and hybrids in order to study cancer, or Alzheimer's, or the impact of new drugs.

All of this may seem far afield from the story of treating kids for height. I mean, it might be tempting to stick a giraffe gene into an embryo, except that: it wouldn't work, there is no one height gene, and no one wants a kid with a long, long neck, anyway. Also, it would be unethical. Wouldn't it?

The point is that the world of scientific discovery and the ability to manipulate genes is fast-moving. The glowing marmosets, for example, mark the first time that a primate (yeah, like us) has been successfully genetically altered so that it also passed that alteration on to its offspring. (Yeah, some of the babies glow, too.) So, it's worthwhile for us to think about what lines we personally might or might not cross, and not just leave it to the bench scientists and the academic bioethicists.

Among the many stories that "Normal at Any Cost" tells is the way cures for diseases become treatments for disabilities, then for disadvantage, until they are eventually offered to fufill desires for perfection. Especially when there is money to be made. Another story within the story: New medical technologies get used long before anyone knows the long-term consequences.

No, I don't think there will ever be kids born with a giraffe gene or two. Now a kid who glows in the dark... hmmm. You'd never need to buy a nightlight! And, someday she could read "Normal at Any Cost" under the covers without a flashlight.