Genetics: The Good, The Bad and The Ugly

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To Test or Not to Test

Genetic testing allows for the beginning of genetic engineering. Currently testing is being used for the discovery of carriers of different genetic diseases, to screen embryos for genetic disorders, to diagnose disease and to help doctors to identify the best treatment for certain known disorders. (“Frequently”) If regulated genetic testing is one of the best things to come of the genetic research that is happening at lightning speed, as it has the ability to provide information that could ultimately lead to the elimination of many genetic disorders. Presently there are three federal agencies who are overseeing and regulating the use of genetic testing: the Centers for Medicare and Medicaid Services (CMS), the Food and Drug Administration (FDA) and the Federal Trade Commission (FTC). Each agency manages a different division of the testing process. The CMS regulates the labs in which testing is being done, ensuring quality testing by “verifying procedures and the qualifications of technicians processing the tests.”(“Regulation”). The FDA presides over the actual sale of testing kits. They work to guarantee the safety and effectiveness of kits sold commercially as well as those used in a laboratory. The FDA also oversees what is called pharmacogenomics, “the use of genomic information to help predict how an individual might respond to a particular drug” (“Regulation”). Compared to the CMS and FDA, the FTC has a relatively small role in the regulation of genetic testing. The FTC is responsible for the advertising of genetic tests to ensure that the public receives accurate information in the advertisements. These current regulations are a step in the right direction. The FDA continues to amend and adjust their regulations as research and testing mechanisms advance. Most recently, on July 31, 2014, the FDA reported that it would be presenting new guidelines for laboratory testing. These genetic tests provide the opportunity for great medical advancements from genetic based treatments to the prevention of disease altogether.

Prevention is the Best Medicine

Genetic testing has already allowed for the prevention of many diseases and disorders that scientists have identified a genetic link to. Most well-known is Angelina Jolie’s decision to have a preventative double mastectomy after learning that she carries the BRCA1 gene. A University of Washington Professor of genome sciences and medicine is credited with discovering what is now known as the “breast cancer gene” or BRCA1. This gene is connected with inherited breast and ovarian cancers. In an Op-Ed article in The New York Times, Jolie writes that her doctors estimated that she had “an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.” The findings of her genetic test led Jolie to the decision of the mastectomy. This decision, by no means a simple one on her part has none the less lowered her chances of developing breast cancer from the 87 percent that it was before surgery to less than 5 percent now. Jolie goes on in the article to quote statistics concerning breast cancer, of the 458,000 people who die each year many come from poor to moderate countries. Jolie writes “It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live.” This is something that is also encouraged by the woman responsible for the discovery of the BRCA1 gene. University of Washington professor of genome sciences and medicine, Mary-Claire King feels that every woman over the age of thirty should have the opportunity to be tested. In an article from Time magazine King stated “Once a young woman reaches 30 or so, if she has a mutation in one of the genes, she should know about it.” She goes on to explain that it equally as likely that a woman could inherit the gene from her father as from her mother. The likelihood that she would not know that she was in danger of inheriting the disease increases on the father’s side, as she may not see evidence in the family history if her father did not have any sisters, or if the sisters simply did not inherit the gene themselves. (Park) This is only one instance where the discovery of a genetic link to a known disease has resulted in the prevention of the disease. According to the Centers for Disease Control and Prevention there is a genetic link to nine of the ten leading causes of death in the United States. The CDC website offers an extensive list of genetically linked diseases, from Abdominal Aortic Aneurysm and Acne to Venous Thromboembolism and Tuberculosis. We could possibly eradicate each and every one of these with genetic testing and gene therapy. Making testing available and affordable is a must for testing and prevention to work.

The Dark Side of the Gene

The down side of all of this, and there is a down side is the potential for abuse. Already we see people who are willing to pay large sums of money for the “perfect” egg donor. One who suits the couples every want and expectation. How much would these people be willing to pay if they could be certain that the ideal characteristics would be expressed in their child? Is that moral, ethical, fair to that unborn baby? The fear is that by allowing parents to choose such specific characteristics how does that affect the parent child relationship. If a child is created, if you will, to be a superior athlete, can they revel in their success athletically? And if they choose not to use that lab given talent will they feel pressure from the parents who made them specifically to excel? In his article “Building Baby from the Genes Up”, Professor Ronald Green argues that “the very intensity of parental love is the best protection against its erosion by genetic technologies.” In short stating that it will not matter to the parent if the chosen genes are expressed as the child grows, once the child is born, the instinctual love between parent and child outweighs any preconceived desires as to specific genetic abilities. The argument can go the other way. If a person is willing to spend an exorbitant amount of money on something, they are going to want their money’s worth. Green argues that children with natural abilities would feel the same pressure if they showed signs of natural talent at a young age and were strongly encouraged to pursue those talents. Of course in the case of natural ability, money is not necessarily a driving force. Beyond the impact of the parent/child relationship, there is the idea of genetic enhancement. Of taking a human being already on this earth and altering their genetic makeup