Judged by Our Genes?

Susan comes from a family plagued by breast cancer. Her mother, sisters, and cousins all suffered from cancer; some of them even died. Although Susan had no sign of cancer herself, she decided to undergo a double mastectomy--as a preventive measure. But Susan was lucky. Scientists recently identified a defective gene that causes breast cancer. Through genetic screening, doctors determined that Susan did not carry the defective gene. Jubilant, she canceled the surgery and went home, her fears laid to rest. Genetic screening can be a life-saver. That's why the U.S. government is funding the Human Genome Project, aimed at identifying every gene in the human body. The head of the project is an evangelical Christian named Francis Collins. For Collins, the science of genetics "is a form of worship in understanding God's creation." He sees genetic screening as a powerful tool for alleviating suffering and saving lives. But genetic screening has troubling possibilities as well. It can easily be taken beyond therapy and used in the service of eugenics--the philosophy that people with genetic defects should be weeded out. This is not some scary prediction for the future. A eugenics attitude is taking root among Americans right now. Scientists have identified many genetically based diseases, but for most there is no treatment yet. As a result, the most frequent use of genetic screening is to test babies in the womb--and to abort those that are defective. A mentality is spreading that only perfect babies deserve to be born. As Collins puts it, couples seeking genetic counseling often have a "new car mentality": If the baby isn't perfect, "you take it back to the lot and get a new one." We're not talking here about racial or political eugenics--the kind practiced in Nazi Germany, where Jews were labeled genetically inferior. Instead, we might call it commercial eugenics--where parents act like consumers who treat their babies as merchandise that must fit certain specifications. Ironically, the bad use of genetic screening is actually making it harder to practice the good use. By aborting defective babies, we're in essence saying that genetically imperfect people have no right to live. And if they have no right to live, why are we working so hard to find genetic cures for them? Eugenics undercuts compassion for people suffering from genetic defects--which in turn destroys our motivation to develop genetic therapy. Yet, as ethicist Leon Kass points out, there will always be some people who are not fully normal--whose defective genes are not detected or who become brain-damaged through injury. We cannot afford to let a eugenics philosophy destroy our motivation to help these people. Couples seeking genetic counseling often have a "new car mentality." Let us never forget that throughout history, societies have suffered much more because of the morally defective, with their evil schemes, than because of the physically defective. This is the simple truth you and I need to constantly explain to our secular neighbors as genetic screening becomes more common. As Francis Collins says, genetic screening should be about ending suffering. It should not be about ending lives.  

04/24/96