Unnatural selection 

What happens when corporations own the code that makes us human?

By the time you read this, Celera Genomics Group and the National Institutes of Health will have announced that they have achieved a feat unique in all of history, one that will alter the destiny of humanity for all time to come: the decoding of the entire human genome, the 3 billion or so units of DNA in every cell in the human body -- the code of human life in all its variety. The effort of thousands of people and the expenditure of billions of dollars have gone into the making of this epochal moment, but perhaps it belongs above all others to James Watson, first director of the federal government's Human Genome Project, the pioneering biochemist whose work uncovering the double-helix structure of DNA made the project possible. Thus it is only fitting that Watson provide the invocation for any effort to understand the meaning of this miracle. Here, then, is James Watson on the awesome responsibility of assuming stewardship over the sacred stuff of life itself:

"Evolution can be just damn cruel, and to say that we've got a perfect genome and there's some sanctity? I'd like to know where that idea, 'perfect,' comes from, because it's utter silliness. We should treat other people in a way that maximizes the common good of the human species. That's about all we can do. To try and give it more meaning than it deserves in some quasi-mystical way is for Steven Spielberg or somebody like that. It's crap."

The "utter silliness" to which Watson referred during a 1998 panel discussion at University of California at Los Angeles is the concerns that have been raised about the prospects for genetically engineering what is called the "germline" of Homo sapiens -- the sex cells, our sperm and our eggs. The result of any engineering of these cells, of the human germline, will be that all future generations shall inherit the choices made by the engineers.

Some bioethicists, and more than a few of Watson's colleagues, have had the temerity to suggest that humankind might pause before embarking on such an irrevocable step -- before, in essence, "taking control of evolution," as Francis Collins, current director of the federal government's Human Genome Project, described it to a meeting of physicians. Just last month, Eric Lander, head of the Massachusetts Institute of Technology's Whitehead Institute for Biomedical Research and a close friend of Watson, called for "an absolute ban" on germline engineering.

With Monday's announcement in Washington, D.C., that the text of the human genome is in hand -- or, at least, in the data banks of a suburban Maryland corporation -- the genomic cognoscenti are engaged in what might be called germline warfare: the debate over whether we should directly alter and engineer the sperm and eggs of ourselves or our children. Some say never. Some say sometimes. And some say, in the spirit of James Watson, let's do it.

Assuredly, there remain dozens of other important concerns to be addressed as the genetic genie makes its way out of the bottle, following a race between the public and private sectors to pop the cork.

"I'm all for mapping the genome, whether it's the public or private sector doing it. It ought to get done, the faster the better," says Arthur Caplan of the Center for Bioethics at the University of Pennsylvania, perhaps the nation's preeminent bioethicist. "But there still is no guarantee that people can get genetic testing paid for if they want it in terms of insurance. There's still no national legislation protecting against genetic discrimination. There's still no guarantee that gene-tic testing will be affordable. There's still no guarantee that we won't test people without their consent, including children and embryos. There's no privacy statute.

"Want me to go on? There's nothing to prohibit testing of the dead. There's nothing to protect stored genetic information from being looked at by third parties. There's no guarantee that counseling will always accompany testing. There's not enough personnel to do it. There's no training in law and in ethics for people in medical and in nursing schools who will be asked to interpret genetic information. There's no standards for advertising and marketing so that there's no preying on others and companies don't exploit fear and even create panic.

"Other than that, we're all set."

Such issues may be difficult, yes, but not insuperable, in the view of Dr. Eric Wulfsberg, director of the clinical genetics and dysmorphology (birth defects) program at the University of Maryland Medical Center. Problems may arise in such areas as insurance or testing or counseling, but Wulfsberg maintains there are mechanisms in place to deal with them, whether it's Congress, the courts, or government agencies and licensing boards.



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