Genome Map Success: Much Yet to Discover
Although the successful mapping of the human genome is being hailed by scientists as one of the most significant breakthroughs of our time, a majority of Americans say they haven’t paid much attention to news about the groundbreaking development, according to a Los Angeles Times Poll.
Nearly six of 10 of those surveyed, however, believe the discovery will prove beneficial to them and their families. And almost half of those who are optimistic say that early detection of disease and repair of defective genes will be among the greatest benefits that the genome research will yield.
Those more skeptical cited potential dangers, including insurance companies exploiting genetic information, doctors using DNA to play God, and commercial and scientific interests becoming embroiled in conflict.
In the not-very-distant future, Americans might be faced with such questions as:
* If a simple test could tell whether you are likely to have inherited any serious diseases, would you take it?
* If your employer and insurance company had access to such test results, would you be concerned?
* If you could choose the gender and physical characteristics of your baby, would you?
* Is character shaped more by genes or by environment?
Medical ethicists say that such issues make it important for Americans to focus on the impact of the discovery.
“While the genome project looks like a technical achievement to be celebrated only by people with very thick glasses and pocket protectors, it’s the start of an intellectual revolution that will touch our everyday lives, on a regular basis, for decades,” said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine.
The poll, in which 1,357 adults nationwide responded between July 27 and 29, showed that relatively few have made themselves aware of the research and its implications. Four in 10 respondents said they haven’t been following the news of the breakthroughs at all. Another 26% said they haven’t followed it very closely.
Moreover, some of the benefits that are most anticipated are far from reality. For example, fixing genes has proved to be difficult, and scientific mastery of such techniques won’t be achieved soon. A more immediate benefit will be that identification of genetic differences in people will allow scientists to tailor medicines for specific populations.
“Now, we live in a world of one-size drug fits all,” Caplan said. “But different people respond differently to drugs. Some get a lot of benefits, some get nasty side effects. In the short run, an understanding of genetics will mean the drugs we have will be made much more effective and less dangerous. Someone might get Claritin A and someone else will be prescribed Claritin B, and with that kind of variety available, the risk of side effects will go down.
“Today, a drug that gets a 60% positive response rate is a tremendous success. In 10 years, that will seem unacceptable.”
The first draft of a map of the human genetic code, announced in late June, was the work of a privately funded biotechnology company, Celera Genomics, and the publicly funded Human Genome Project. Private biotech companies maintain that the only way they can afford to fund future research is by patenting human genes.
More than six in 10 respondents to The Times Poll said they opposed the court-upheld right of private companies to patent human genes.
Medical ethicists, including Caplan, say the issue needs careful attention, but patenting is inevitable.
“We already have issued many patents on human, plant and animal genes,” Caplan said. “But the real question for the future is, how will we demand responsible ownership of genetic information? Even if you have a patent, it doesn’t mean that you should be able to hold the world hostage if you have a cure for syphilis or cholera or you have found a vaccine for AIDS. Just as we’re now fighting about who should control the prices of drugs, even though companies have patents on them, we may well have the same fights for the prices for genetic patents.”
The Times Poll also showed that some fear a brave new world as a result of genetic engineering, but others are more hopeful. Almost one-quarter of those who are optimistic said they believe they and their families will live longer, healthier lives. Nearly three in 10 of those polled who expressed fear said they worry about scientists playing God--creating clones and designer super-babies.
According to medical ethicists, the ability to manipulate genes to enhance physical or mental characteristics does raise a number of moral questions.
“If we begin breeding for certain attributes, such as beauty or intelligence, and some people can buy those attributes and others can’t, we should be concerned about whether being able to buy these enhancements would be good for society as a whole,” said Lori Knowles, an associate for law and bioethics at the Hastings Center, an independent bioethics think tank in New York. “On the flip side, there are certain diseases that everyone would agree should be eradicated, if possible. But what about other conditions that people have that many don’t consider desirable, yet those afflicted lead happy and positive lives? The disabled community thinks they may be further marginalized, if everything but a narrow norm is engineered out of existence.”
The extent to which people see the value of genetic engineering depends on whether they believe heredity or environment is the key to a person’s health and happiness.
About seven in 10 of those surveyed by The Times believe a child’s environment has the most significant effect on his or her future. This group might find their views challenged, experts say, if genetics is accepted as the basis for behavior and personality traits. Such an approach would prove enormously controversial, as it already has been in discussions of race, ethnicity and gender.
“The focus on genes and the sort of certitude that goes along with it is quite dangerous because it could make us stop looking at environmental factors and societal stresses as causes for diseases or behavioral problems,” Knowles said. “Genetic reductionism distills everything to one cause and one possible outcome. It doesn’t allow for a nuanced understanding of all the other factors that might influence whether you do or do not manifest a disease or become a criminal or look beautiful or exhibit great intelligence.”
While nature versus nurture debates may thrive in academia, and eventually affect public policy, genetic testing could represent the most direct threat to families if insurance companies and employers abuse information. A majority of those polled by The Times said they would be very likely or somewhat likely to take a genetic test to learn if they were at risk for disease. But among those who would not take the test, nearly one in five said they worried that they could be discriminated against or exploited simply for being at risk of disease.
“Risk, to me, is not enough grounds to allow discrimination or invasion of privacy,” Caplan said. “We desperately need a federal privacy law. It would be prudent to extend the Americans with Disabilities Act to include genetics, and we should insist that no one be allowed to be tested without their voluntary, informed consent. There should be significant penalties for anyone who tests without consent.”
How the Poll Was Conducted
The Times Poll contacted 1,357 adults nationwide by telephone July 27-29. Telephone numbers were chosen from a list of all exchanges in the nation. Random-digit dialing techniques were used so that listed and unlisted numbers could be contacted. The entire sample was weighted slightly to conform with census figures for sex, race, age, education and region. The margin of error for the entire sample is plus or minus 3 percentage points. For certain subgroups the error margin may be somewhat higher. Poll results can also be affected by other factors such as question wording and the order in which questions are presented.
