The Ethics of Genetics
by Piper Wallingford
With the evolution of genetic testing, people now have access to their health on a molecular scale. Geneticists can identify the genes that cause, or can increase the risk, of certain diseases. But because of the emotional stress genetic testing can cause, patients undergoing a medical genetic test receive the results from a genetic counselor, who can provide support and help patients make informed choices.
As genetic testing becomes readily available, so does access to information about genetic health risks. For a small price and a spit-soaked cotton swab, individuals can learn about their genetic health risks from the privacy of their homes. While home testing may remove the intimidation of a medical center, most private testing companies do not provide genetic counselors. Private tests can actually cause more stress than they eliminate.
Genetic diseases are created and expressed like other inherited traits. Genetic diseases either occur when there is a mutation in the DNA, or parents pass a gene to their child. Some traits and genes are recessive, meaning a child must inherit it from both parents. Dominant genes show themselves no matter what the recessive genes may be.
Because parents can carry a genetic disease without being affected, a fatal condition could be passed to their children. An example is Tay-Sachs disease, which produces a toxin that destroys nerve cells. Most children with Tay-Sachs die before they are 5 years old. Tay-Sachs is recessive, but is most common in European Jews. As a small population, recessive genes are more likely to be expressed when both parents carry them.
Even dominant genetic diseases are not always immediately expressed. Huntington's disease is a neurological disorder that causes uncontrolled movements and loss of cognitive abilities, and shortened life expectancy. But Huntington's does not usually manifest itself until middle age, meaning affected individuals could have reproduced and passed the disease to their children.
Genetic testing can identify Huntington's before an individual has children, or identify whether two individuals could pass Tay-Sachs to their child. But without a genetic counselor, this information has the potential to cause emotional harm. Individuals diagnosed with Huntington's have an increased suicide risk, and Tay-Sachs disorder is extremely difficult for parents with an affected child. An informed, empathetic counselor is an essential resource.
While companies that provide home testing kits do not diagnose Huntington's or Tay-Sachs, they do identify other debilitating disorders. 23 and Me, a San Francisco-based genetic testing company identifies close to 90 traits and health risks. Among these are Lupus, which occurs when the immune system attacks the body, and Lou Gehrig's disease, a fatal neurodegenerative disease.
These testing companies do not asses whether or not an individual has the specific disorder, but rather their genetic predisposition to experiencing the disease. For example, women are more likely to get breast cancer if there is a family history. A genetic test would analyze a woman's DNA and provide her probability for eventually having breast cancer.
If patients have questions or are worried about the results of their tests, genetic testing companies refer patients to their local physicians. Private testing companies argue that since they do not do medical diagnoses, they have no obligation to provide counseling services.
But the New York and California Health Departments contend that these companies could cause patients harm. New York sent 31 letters to testing companies, including 23 and Me, informing them that they needed licenses to solicit DNA. California sent similar letters to 13 companies, based on the potential emotional damage that genetic testing could cause.
Genetic testing is an individual choice. Many people with a family history of Huntington's or Tay-Sachs do not want to know if they have the disease. And if people do not want to know their probability of diabetes, or even male-pattern baldness, they can save $400 by not being tested.
