We must study ramifications of the genome project
Nancy E. Piazza
It would make a great science fiction movie. Except it's not fiction. The race began 10 years ago to create a map of our genes, a complete sequencing of the human genome. In time this map will provide scientists with the knowledge to write a set of instructions that could conceivably be used to create a human being. Enter the "Biology Century," minus Boris Karloff.
Research scientists don't claim creation as their goal. But the potential is there. The Human Genome Project, spearheaded by the U.S. Department of Energy and the National Institutes of Health, states simply its goal is to sequence the entire genome. This means to identify and determine the order of the approximate 30,000 genes and 3 billion chemical base pairs in human DNA.
While the genome was officially mapped last summer, it will be many years before scientists identify and comprehend the genetic code. In the meantime, seventeen other countries are racing ahead with human genome research and working on similar projects. The competition is heavy. What's it all about? And what's it all for?
The ideal use for the completed genome is to uncover the genetic triggers for hundreds of diseases. The medical profession will be able to explore the most fundamental causes of disease. Diagnostic tests will be created, resulting in earlier treatment. With further research, gene therapies and drugs can be developed to effectively fight diseases specific to each individual's genetic code, even before symptoms are present.
But with this new knowledge right around the corner, we have a number of serious ethical, legal, and social issues to face. Who will get tested? Will genetic testing be covered by managed health care? Will insurance rates rise dramatically because people want to know which diseases they may get? Would we want to know in advance about a disease if there is no known cure for it? Who will have access to our genetic information? Will our boss? How about our insurance carrier? Could our test results be used against us?
Clearly we can't allow our genetic information to be up for sale. We need laws enacted to protect individuals from discrimination, which would surely follow if we allow such invasions of privacy.
So far, no legislation has passed on the federal level. But forty states have laws preventing insurance carriers from requiring genetic test results. Ohio is one of these states. But Ohio does not have any laws preventing workplace discrimination based on genetic test results.
A key fact to remember is: being predisposed to a disease doesn't necessarily mean we'll get it. If people have the genetic likelihood to get lung cancer, but they never smoke and are not around smokers, they may not get the disease. Environment and behavior play crucial roles.
While genetic testing isn't new, it's going to become more prevalent. It was used this summer to find the cause of an E-coli outbreak at a county fair in Ohio. Genetic testing is used routinely at crime scenes and for paternity suits. Certain diseases already have accurate genetic tests to aid in their diagnosis. It is genetics which enable cloning of animals. And as recently as August, legislation was introduced in London to amend the ban on human cloning.
Before undergoing genetic testing, we should carefully consider the psychological impact if our test results are less than desirable. Will we be traumatized if we learn there is something horrible lurking in our genes? If our results become public knowledge, we could be ostracized -- ostracized due to genetic markings for diseases and traits that may never present themselves.
This raises serious ethical questions. Who decides what is normal? Who decides what we should look like and what character traits are desirable? Hitler wanted all the people in his country and those under his power to be tall, blue-eyed blondes. A trait seen as acceptable in one culture or race, might be unacceptable, or even flawed, in another.
Genetic enhancements may, in time, become available. At what risk? Once the technology is here, parents may want to modify genes of their unborn children. If it's done to prevent the baby from acquiring the gene for a disease, we may consider it justifiable. But what if it's to give the child a height advantage? Should we be altering genes that a man and woman give to their children?
The reality is genes don't decide a person's future. Genes interact with each other producing varied results. We grow up and live in surroundings that shape us and expose us to factors beyond genetics. In addition, we have unique responses to all influences. Countless studies have been done on twins proving this. However, we acknowledge genes are a key part of the puzzle that make us unique, yet similar to our ancestors. And it's the sequencing of these puzzle pieces that could lead to the prevention of diseases lying dormant before they become manifest.
Mapping the human genome has given us the potential for profound medical breakthroughs, diagnostic tools, treatments, and cures.
But we can't pretend technology with such great promise doesn't have the capacity for great harm in the wrong hands. The dangers to society should be carefully considered. In our country, the Human Genome Project is spending three to five percent of its budget on addressing ethical, legal, and social issues. But it's up to each of us to fully understand the ramifications of these issues and voice our opinions. Legislation and controls are needed before these events, that could bring great benefits to mankind, become its downfall.