- The Washington Times - Wednesday, April 12, 2000

An astonishing announcement was made last Thursday. Craig Venter, the chief executive officer and scientific major domo of Celera Genomics, a private company based in Maryland, said he and his colleagues had finished analyzing all the component pieces that make up human DNA.
Nearly every human cell contains a full complement of the DNA, the software that drives our development and aging throughout each of our lives. There are about 3 billion letters in the roughly 80,000 genes that make up the instructions for making a human. Celera said it has now identified almost all of those 3 billion letters.
The next step, which Mr. Venter says will take about two months, is to arrange the 3 billion DNA letters in the right order so the words what we call genes are in the right order. While it will take many more years to develop a dictionary to understand what the words mean, and many more years past that to learn how to change or manipulate the words to rewrite our programming, the Celera announcement is one of the most important things that will happen in this new century. It is an amazing scientific accomplishment.
But sadly, the potential value of this monumental achievement may be delayed or even lost if we do not move public policy and the law forward to respond to what science has achieved.
Forgotten in all the hoopla about cracking our own DNA code is that we have done almost nothing to prepare for the advent of a flood of new genetic information about ourselves. The most immediate application of new DNA knowledge will be to correlate patterns of DNA with disease states. This has already begun with early findings of patterns of inheritance with respect to cystic fibrosis, breast cancer and Huntington's Disease and specific typos in our DNA. With the whole genome about to be known, the pace at which new genetic tests will fly into medicine is going to accelerate rapidly.
Yet, despite years of ethical hand-waving about the dangers of having DNA information without solid public policy, no policy exists. We've had some movement regarding patents and intellectual property, but that hasn't touched our need to make ourselves and our institutions ready for the impact of the genomic age.
There is still no guarantee that anyone who wants to use genetic testing to find out about their risks of disease will be able to get their insurance company or HMO or federal insurance to pay for the cost. There is no protection should an insurance company or employer decide to use genetic testing to discriminate against those whose genes put them at high risk of getting a serious disease or a costly disability.
Genetic privacy is in no better shape. No privacy statute has been enacted to protect genetic information. There is nothing to stop those who have tissue samples or biological materials stored from going out and looking at them to see what they can learn about individuals. No prohibition that says the dead cannot be sampled by those curious about their genetic makeup.
Nor are we prepared with the professional expertise we will need to translate the genetic revolution from the lab to the doctor's office. We are woefully short on trained personnel to counsel us about what genetic tests mean. Nor is there any agreed upon standardized training in law and ethics for those who will be the point persons in using genetic information to diagnose and treat you and your children.
We have not even set any standards for how marketing and advertising should work in the realm of genetics. The opportunities for exploiting fear and worry are real. The possibility of creating anxiety and panic is not hypothetical.
There is every reason to celebrate the triumph of humanity deciphering the component parts of its own biological programming. But, if we are going to enjoy the medical and public health benefits that this work can bring we must get moving quickly to build ethical and legal protections that will ensure this knowledge will be put to good use.

Arthur Caplan is the director of the Center for Bioethics at the University of Pennsylvania. He has been a consultant to Celera and to a number of institutions that have received public funds to map the human genome.

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