Two teams of scientists, one public and one private, made history last week by announcing that they have finally completed a draft map of the human genetic code. The knowledge is expected to help cure some of humanity's most deadly diseases, but it also sets the stage for a host of possible abuses, from discrimination based on genetic background to invasions of personal privacy. So the Business Journal asks:
Are you worried about the misuse of human genetic technology?
I don't think we are going to have a free for all. It (the Human Genome Project) will challenge regulators to protect consumers against any threats, whether they are imagined or real, of the possible implications. Dissemination of fear is going to be accelerated because we have such powerful tools of communication these days. I think consumers and regulators are trying to become as educated as possible. The result will be increased regulation, which may or may not be the appropriate solution for the problem.
Dr. Wayne Grody
Director, DNA Diagnostic Laboratory
UCLA Medical Center
We are concerned about employment and insurance discrimination. It has been talked about for several years on a theoretical level. But it has not raised the specter of a big threat yet. If you talk to most geneticists or counselors, we don't know of any cases, first- or second-hand, of any discrimination happening yet. But the potential is certainly there. In California we are fortunately somewhat protected, at least on the insurance end, with laws saying you can't be discriminated against based on genetic information. Our strict rule is that we only give the results of the (genetic) test to the patient.
Dr. Diana Petitti
Director of Research
Kaiser Permanente Southern California
I think there are people who are enormously excited about the potential for understanding disease and being able to develop treatments that will alter the course of medicine. But we have to realize it is like getting to the moon and deciding what to do once we get there. The job of how to use this genetic information is just beginning. We have the genes, now we need to know how they work, how to modify them to affect the way they work in illnesses and life. For the medical care system, I think it is going to mean an acceleration of the pace of knowledge.
With the Human Genome Project, what we have now is a road map of the human gene. Before that, drug discovery was like going into the library without a card file or a Dewey decimal system. It was hunt and peck. Now we have a good organizational structure where one can proactively look for specific genes. But genetic testing has been around for a while. There are already genetic tests that screen people to determine their inclination toward certain diseases. Atomic energy was a breakthrough, and people found the negative sides of those discoveries. But with this we could be looking at some more important drugs developed to treat diseases that were untreatable. Hopefully, well-meaning companies that are set up to commercialize the science will do it in a responsible way.
Los Angeles Area
Chamber of Commerce
I certainly look at the information that was released this past week and see it as something that is very important for the Los Angeles region, because we have so many companies and several industries in that area that I believe will be able to take advantage of the work that was announced. In putting together this road map, we will see the biomedical, biotechnical, pharmaceutical industries in this region achieve valued opportunities. I also think this will be of great benefit to the many health care providers in the Los Angeles region, where we have so many health-related businesses. As to the ethical questions, I think that has yet to be sorted out. I think the ethics community will have to debate these issues and we will have to arrive at some agreement as to what the standards will be. There will be questions and debate, but it won't come until we know the true ramifications of this road map.
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