Social and Ethical Concerns

The Goal

"I not only think that we will tamper with
        Mother Nature, I think Mother wants us to."

                   - William Gaylin

The fundamental goal of the Human Genome Project (HGP) is to improve human health. By identifying people at high risk for preventable diseases and directing physicians toward appropriate treatments, the HGP would be doing just that. But, as is the case with all scientific breakthroughs, the rapid advancements in the HGP give rise to certain doubts and fears concerning the social and ethical implications of the project. Issues of particular importance include the privacy of genetic information, the patenting rights of genes, the risk of harmful psychological and social reactions to the discovery of a person's genetic information, and the potential of unequal access to emerging genetic technologies. Scientists from every phase of the Human Genome Project agree that it is essential to address the social and ethical issues that arise from it.

Privacy Concerns

Because the human genome provides information about what diseases a person is likely to get and when, the privacy of this information is extremely important. If they had access to the genetic information of potential employees, employers could avoid hiring people because they seem likely to take sick leave, retire early or resign for health reasons. With the same information, health insurance companies could make decisions about coverage and premiums for individuals.

Recognizing the risk of allowing too much access to genetic information databases, thirty-seven states now have genetic privacy laws offering protection against the use genetic tests in all activities, including obtaining employment and buying health insurance. The federal government, however, has still not addressed the issue of genetic discrimination in the workplace or in insurance coverage.

Patenting Genes

A particularly difficult question to answer is the question of who owns your genes. Celera, the National Institutes of Health and a handful of other companies seem to think that they do; they have already filed patent applications for thousands of DNA sequences. According to the United States Patent and Trademark Office, DNA sequences are patentable. The only conditions for an invention to be patented are that the invention must be novel, useful and non-obvious. Beyond the obvious opposition to patenting gene sequences because it seems sick and twisted to patent things that are technically the property of each individual, there are other reasons to oppose gene patenting. Some scientists oppose patenting because they feel that discovering genes is trivial, so the discoverers don't deserve a patent. Others oppose it because patents can be awarded unfairly. For example, Human Genome Sciences (HGS) received the patent on the gene for CCR5, a protein that helps protect against HIV. The problem here is that HGS didn't even discover the gene; the company simply had the foresight to patent it as a potentially lucrative gene.

The general scientific view is that science will advance more quickly if researchers have free access to their subjects, i.e. no patents. However, there are those who support gene-patents because they feel that without exclusive rights, no one would invest in the research and development of our increasing genetic knowledge. The major debate is over the point in the research process at which a discovery can be patented.

Psychological / Social Effects

"We now have discrimination down to a science." - Gattaca, 1997

As the human genome nears completion, genetic tests will become more common. In principle, these tests are beneficial: they clarify diagnoses, thereby providing for appropriate treatment, and they identify persons at high risk for conditions that are preventable. But, is it really beneficial for a person, or others, to know that he or she is susceptible to a particular disease? This knowledge would no doubt lead to unwelcome changes in the person's life. Personal anxiety, negative effects on relationships and social stigmatization are all likely to occur. Further, many of these tests are now (and will likely remain so for a good long time) uncertain. Enduring the types of psychological challenges aforementioned would be horrible if the test results were incorrect.

Unraveling the genome also poses the risk of a eugenics revival. Germ-line manipulation would allow doctors to go into the embryo and change specific genes. This technique would be invaluable in preventing diseases and retardation in children, but it could also lead to "designer" or "made-to-order" babies. We'd begin to make distinctions between "good genes" and "bad genes," just as Hitler's Germany and other countries made the distinction between "good blood" and "bad blood" in the early part of the twentieth century. And, just as they did during that time period, people would act to eliminate these "bad genes." This would be strengthened with advances in our understanding of behavioral genetics, which holds that genetics play a major role in determining behavior. If there is a genetic diagnosis for traits like intelligence or homosexuality, what's to keep people from creating super-intelligent babies or "curing" homosexuality?

The thought that everyone might look and act the same and people would lose their individuality is appalling. We'd become an incredibly boring race.

What if ?

Imagine what it would be like, to know from the instant you were born how long you would live, how intelligent you would become, what diseases you would have, and how much money you would make. Wrap your brain around this: what if you could design your own child? Would you make him tall? Muscular? Blue-eyed? Brown-eyed? Would you want him to be a doctor? An athlete? An astronaut? The possibilities are endless...

Inspired by such an idea, Writer-Director Andrew Niccol created such a society, where people are genetically engineered for looks, talent, skills, and intelligence. Those children who are products of parents' decision to inseminate naturally have no choice but to live in a lower caste of society. A civilization of the haves and have-nots, exemplified and unconditionally accepted by the masses. Gattaca is the story of one man, determined to prove to himself that the genetic code which "holds him back" is only an obstacle to be overcome. Infiltrating the elitist group of men and women working at the Gattaca company, he steals someone's identity and attempts to hide his genetic imperfection.

The movie was a success not only in the commercial sense, but also in the intellectual one as well. Is it not possible, once we know the function and layout of the human genome, that we could do just that? Genetically engineer society? The scientific/medical benefits are enormous and rather obvious, but the social implications of such a fundamental power over nature and the human being as a species are almost frightening, and more so because its contact with reality is strengthening rapidly. With the announcement that the first draft of the human genome has been mapped, comes philosophical, ethical, social, and political discussions about whether boundaries ought to be set, whether or not human beings are allowed to cross that line. The fundamental question of what makes us human is being asked quite bluntly. The illegal "trade" of human identity in the movie calls into question the consequences of stripping the human species into a complex but controllable genetic code: "You could go anywhere with this guy's helix under your arm."

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