The Human Genome Project (HGP), which concluded in 2003, has been hailed as the equivalent of the Manhattan Project to build the atom bomb, and the Apollo missions to the Moon. Sequencing the human genome led to many surprises. For example, humans have just 20,000 to 25,000 genes, far less than previously thought, and scientists will be examining their role via the exciting new field of Epigenetics for decades to come. This breakthrough promises to revolutionize medicine, and perhaps in our lifetime we’ll see cures or effective treatments for such scourges as Parkinson’s and Alzheimer’s and more. But like any new scientific discovery, modern genetics is fraught with ethical dilemmas. Who owns your genes? Should a corporation be allowed to patent a gene discovery? Should we manipulate genetics, and will this technology soon be available to “basement tinkerers” as well as major institutions? Just as in the cyber-world, the genetics revolution rolls on as litigation struggles to keep up. Here are some of the major dilemmas facing modern genetics today.
5. Should Companies Be Allowed to Patent Human Genes?
Most people would be surprised to learn that more than 25 percent of genes are patented. Companies and universities own these patents for gene sequences, which they can use to develop new diagnostic tests and new drugs. These patents give companies and investors more incentive to fund expensive research in the field, possibly leading to new treatments for diseases. On the downside, the patents discourage other researchers from pursuing new discoveries in that area, and they lead to more expensive diagnostic tests. In one noteworthy case dealing with this issue, in August 2012, a U.S. federal appeals court upheld patents by Myriad Genetics that give the firm exclusivity on the isolated BRCA1 and 2 gene sequences used to diagnose breast cancer. The American Civil Liberties Union and other critics had contended that genes should not be patented. Said ACLU attorney Chris Hansen, “Human DNA is a natural entity like air or water. It does not belong to any one company.” Legal experts expect the issue will eventually be settled in the Supreme Court.
4. Genetic Testing Raises More Questions Than Answers
Would you want to know if you had a great likelihood for developing a devastating genetic disease such as Parkinson’s or Huntington’s? Do you have a responsibility to a potential mate to reveal such information before having children? Genetic testing has become so popular that many companies, such as deCODEme, Existence Genetics and 23andMe offer testing packages for ancestry analysis and to search for genetic traits associated with certain diseases. However, many doctors and geneticists argue that such tests are often misinterpreted and are unreliable. An undercover investigation by the U.S. Government Accountability Office in 2006 found that DNA from five different people sent to four different testing companies yielded widely divergent and often contradictory results. Some people believe there should be more federal oversight of genetic testing, especially of the growing Direct to Consumer (DTC) market of in-home testing. Even genetic testing conducted by medical professionals has sparked debate. Many people say that they’d rather not know that they have a greater susceptibility to a certain type of cancer or other illness, as it can lead to depression and anger. Others are leery of being tested because of fears that negative results could be used to discriminate against them in employment or in obtaining insurance. Despite the passage of the Genetic Information Nondiscrimination Act (GINA) in 2008 in the U.S., many people still fear they’ll be victimized by such discrimination.
3. Should Human Cloning Be Permitted?
In 1997, researchers cloned a sheep, Dolly, creating a media sensation. While many have claimed the inevitability of human cloning is just around the corner, cloning a human being will prove to be much more difficult. Currently, more than 90 percent of attempts to clone animals fail and cloned animals are more susceptible to tumors and rare disorders. These are two major reasons the American Medical Association and other medical professionals oppose cloning to produce a human being, or so-called “reproductive cloning.” While the U.S. has no federal laws prohibiting such cloning, more than a dozen states ban reproductive cloning. Yet some feel our innate fear of human cloning — rooted in part in horrific sci-fi visions of armies of specialized “super-soldiers” — is overshadowing the possible benefits. For example, cloning would provide a new alternative to infertile couples who want a child that is 100% related to them; it could help lead to breakthroughs in the fight against many diseases; and non-reproductive cloning could be used to produce organs and tissues for transplants. Here’s an interesting debate on the issue of human cloning from the Human Genome Project.
2. Is Organ Farming Ethical?
Perhaps one of the more interesting, if macabre, promises of genetic engineering is the idea of “organ farming.” Currently, the debate centers on whether it is ethical to clone animals, such as pigs, solely to provide organ transplants for humans. The debate will only get more complicated in the future; some theorists forecast a day when “headless cadavers” might serve as a stockpile for those needing transplants. Certainly, this would be a benefit for those who awaiting heart, liver or other transplants. The idea of human donor farms, though, is extremely disturbing to most people. And the cost of supporting the needs of “undead-Americans” (for lack of a better term) would be astronomical.
1. Should Parents Be Able to Order Genetically Perfect Children?
Will we soon be able to tailor our children to our whims? Should we be allowed to do so? Naturally, it would be a great advance if we could do away with genes that cause inheritable diseases; it’s a murkier issue to wonder if we should tinker with eye color or IQ potential. One can also argue that this quest for genetic perfection would lead to a so-called “genetic social divide” in society between those who could afford custom children and those who could not. Scientists have thus far been able to insert instructions in the code of animals, causing cats to glow in the dark and goats that produce spider silk in their milk. Should people be allowed to do the same? If history is any guide, once something is possible, someone somewhere will start doing it, ethics aside. And like the emergence of the Internet, once a technology arises, people will take it to all sorts of strange and wacky places. Will we soon have a world free of genetic disease? Will back alley gene dealers hawk bootleg DNA? Will the science fiction dystopias of Gattaca and Brave New World come to pass? These are all scenarios that may one day generate incredibly controversial political debates.