The "sequencing" of the human genome is a spectacular accomplishment that promises reductions in disease, longer lifespans, and other breakthroughs. But we need another, analogous breakthrough in law and ethics about how to use the new knowledge.
Today, the United States has almost no law on this subject. No clear authority governs what researchers can and cannot do. No statute ensures DNA privacy. No laws dictate how genetic information and genetic engineering can be used. Nor is there anything close to a social consensus of what the ethics of genetic therapy, genetic engineering, and human reproductive cloning ought to be.
Admittedly, ethics and regulation aren't gee-whiz topics. The genome effort itself promised some glory for the scientists involved, and while a lot of work, it was a matter of collecting data. The tangle of questions raised by genome science, on the other hand, will be inherently vexing to solve. That's why the political side of the issue is going overlooked.
Consider that we don't yet have a comprehensive system for regulating genetically engineered food. Now, fiddling with crop plants is relatively unthreatening: We can imagine perhaps an annoying foul-up that creates herbicide-resistant weeds. Yet neither Congress nor any international treaty has managed to come to grips with regulating biotech in squash and canola.
Human genetic engineering could cause not just errors, but horrors. If we can't face the regulation of gene use in plants, how are we going to face the far more worrisome issues of gene use in people?
What's needed to start coming to grips with the regulation of human biotechnology?
First and most urgently, we need a Constitutional amendment spelling out medical and genetic privacy rights. The amendment would specify that every individual owns his genes, and that genetic alterations cannot be imposed on any of us. Such an amendment would not preclude the use of DNA in criminal investigations; police would simply need to obtain warrants to examine genetic records, just as police need warrants for most searches of private possessions.
Usually, it's best not to tamper with our Document-of-Documents unless really necessary. In this case, it's necessary. The Framers, who surely considered medical decisions a private matter, who be aghast to learn the power government and industry is about to acquire over the innermost aspects of our bodies. Good things will come from genetic research, but bad things may, too. It's best to get the genetic privacy concept into the Constitution fast, in strong, plain words, before technology leapfrogs into something spooky that the law is unprepared to stop.
What's needed is a law that defines the genome as "basic information." We may allow individual genes to be patented, since each is "unique" to its owner. That is, my DNA for blue eyes is slightly different from your DNA for blue eyes, so it might be fine for me to patent the Gregg Easterbrook E-Z Splice Blue Eyes GeneT (order now and receive a free chromosome!), so long as I couldn't assert ownership over blue-eyes DNA generally. This kind of distinction needs to be spelled out fast, to stop the current land rush to patent genome data.
In addition, when a company finds a specific person's genes has commercial value, that person should share in the revenue. Right now, most people who donate blood or tissue samples that become the basis of genetic drugs receive for their services nada.
At these early stages, when the technology is rudimentary, the concern about genetic gains may seem overblown. If genetic therapy allows the cure of cystic fibrosis, we feel confident that it should and will be widely available. But what if a breakthrough enables the enhancement of the mind? What if it turns out to work for some people but not others? Or what if a longevity breakthrough is so expensive, only the rich can afford it? What if some genetic screening tests disqualify people from jobs or health insurance just because they might get sick? (This is happening already with a few maladies; soon, employers and insurers may be able to scan your genes for the proclivity for hundreds of physical and mental illnesses.)