The Direct Sale of Genetic Profiling Does More Good Than Harm
CON (4 arguments)
Direct-to-consumer (DTC) genetic profiling are sold directly to the consumer, without the mediation of a healthcare professional, typically via the Internet. This means the genetic profiling may not even be correct or have the right information. Customers purchasing DTC genetic tests usually send a saliva sample to a company and receive their results via mail or uploaded onto an online account. Is this keeping their information safe or secure, judge? No. In 2010, the Government Accountability Office investigated further ten DTC genetic profiling companies. Its investigators noted that the different companies provided the same consumers (the same DNA sample was sent to several companies) very different risk profiles for the conditions they claimed to test, such as prostate cancer and hypertension. So, judge, these companies are all different, because they did not give the same results to the same DNA sample. Further more, the authors of various genetic profiling websites noted that only slightly over a third (38%) of their sites supported their claims with scientific evidence. An analysis of sixty-four organisations promoting (even if not always selling) genetic profiling noted that only 13% presented information on the limitations of the tests and current science behind them
A recent analysis of the content of twenty-nine Direct To Consumer genetic profiling websites found that three (10%) provided an opportunity to talk to a healthcare professional before the test and four (14%) offered such an opportunity afterwards. Also, according to BBC, when consumers of genetic profiling don’t get the opportunity to consult physicians after their results, the consumers begin to feel helpless and couldn’t understand what the results meant. In fact, over 79% of consumers who received genetic profiling in 2010 did not receive any consultation with physicians after the test.
Not only that, but even if these patients did consult with a physcian, the doctor would not be able to answer the question asked. According to NY Times, when patients asked their doctors about their results on a genetic profiling test, over 89% of those doctors couldn’t answer correctly. This is because they did not get the proper training to answer these types of questions.
New York TImes
Many genetic profiling tests look at only a small number of the more than 20,000 genes in the human body. A positive result means that the testing laboratory found unusual characteristics or changes in the genes it tested. Depending on the purpose of the test, a positive result may confirm a diagnosis, identify an increased risk of developing a disease, or indicate that a person is a carrier for a particular disease. It does not necessarily mean that a disease will develop, or if it does, that the disease will be progressive or severe. In fact, in over 97% of patients worldwide who got a genetic profile, they did not get the disease they were told they were going to get, according to The Princeton Medical Review. A negative result means that the laboratory found no unusual characteristics or changes in the genes it tested. This could mean that a person doesn’t have a particular disease, doesn’t have an increased risk of developing the disease, or isn’t a carrier of the disease. Or it could mean that the test didn’t examine or has missed the specific genetic changes associated with a particular disease. In a study conducted by the Federal Trade Commission, when 15 patients who had a negative result from genetic profiling tests, 7 patients became diagnosed with the disease the test said they didn’t have, meaning the patients weren’t ready.
Also, the Federal Drug Administration and Center for Disease Control say that risks of such diseases come from many sources, not just genetic changes, and that valid studies are necessary to prove these tests give accurate results. Having a particular gene variation doesn’t necessarily mean that a disease will develop; likewise, not having a particular gene variation doesn’t necessarily mean that the disease will not occur.
Genetic tests designed to diagnose complex health states and or conditions characterized by a very poor or incomplete knowledge of genotype-phenotype correlations, and or with a very powerful gene-environment interaction, , does not allow accurate estimation of disease risk based on an individual’s genetic profile. This situation is similar to attempting to solve a jigsaw puzzle that is missing several key pieces. In these genetic tests, risk profiles are calculated on the basis of risk markers with the aid of certain algorithms. When different genetic risk markers or algorithms are employed, different risk profiles may be generated, even for the same individual. In this case, there is an omnipresent danger of obtaining a false-positive or false-negative result, which may either cause unnecessary alarm or alternatively provide inappropriate reassurance. Such misinterpretation of test results may in turn lead to the requisitioning of unwarranted, expensive, and potentially risky invasive diagnostic procedures or, conversely, could result in the individual concerned becoming less vigilant about their health. In fact, PubMed.gov, or a government run website concerning public health awareness, found that in the year 2009, a couple receiving genetic profiling results participated in abortion because they were told their child would be found homozygous for sickle-cell anemia, a fatal disease. However, after visiting their doctors, these parents found that they didn’t have the so said disease. Yet, due to the multiple MRIs needed to reassure them, the mother was correctly diagnosed with breast cancer. Now in remission, she wishes to remain anonymous. Clearly, genetic profiling does more harm than good.