Schleckser's Direct-To-Consumer Genetic Testing

The second concerning issue began after the completion of the thirteen-year long Human Genome Project (Schleckser). This project lead people to become curious about what genetic codes their DNA entails. Curiosity leads to the introduction of Direct-to-Consumer genetic testing, which involves a consumer, to perform their test from home and receive results at home. The concerning issue involves pure DTC genetic testing which eliminates a physician completely from testing and involves consumers to decide where and when they want to get tested, send their samples off and receive their results all from home (Schleckser). One of the only pure DTC tests that can be used without the discretion of a physician is 23andMe. 23andMe was labeled the “invention of the year” in 2008

because is allows consumers to purchase genetic testing for only ninety-nine dollars and from the comfort of their own home. This genetic test tests for two hundred forty-seven diseases and conditions and comes with step-by-step instructions on how to perform the test (Schleckser). When performing the test you must submit a saliva test into a concealed tube to be sent off to the lab. Once the saliva sample has reached the lab it typically takes about 4-6 weeks to receive test results back. This genetic test, however, only tests the DNA through genotyping, which inspects only “predetermined locations on the genome where small variations-called single nucleotide polymorphisms (SNP’s)- are associated with a particular trait (Schleckser)”. This genetic testing can receive outcomes of conditions including disease risks, drug responses, carrier statuses and general traits (Schleckser). Once the consumer receives their test results back they can view them through graphs or numerically with their lifetime risk. The results also associate the consumer’s risks with the average populations. There are many people that argue that there should be a physician involved in each process of the DTC genetic testing process, such as 23andMe. Critics worry that consumer’s will purchase such products without any knowledge of them and do not understand the limitations behind them (Schleckser). One main concern is the psychological worry that consumer’s will be unable to read their test results without a physician accompanying them have this situation turn traumatic. However, each of these concerns are unverified because the DTC Industry has leaders to relay genotyping services and clarify each risk surrounding their product (Schleckser). Previous research also indicates that most people understand their data and results presented to them, take little medical attention to these responses, and do not suffer from psychological anguish. Studies also show that even if consumers sought counseling from a physician that the physician would lack knowledge concerning genetic testing and could not assist consumers in their testing (Schleckser). So, without the help from a physician consumers must be able to make conversant decisions about purchasing a genetic test and the risks that could come with following through with it. In order for the consumer to become educated about DTC genetic testing leaders from the clinic have provided thorough information about the risks and benefits of the tests (Schleckser). Consumers interested in purchasing a genetic test can find these risks and benefits through a free demo account created by the company. This demo account will show the potential consumer pretend test results of fictional people. This demo is ideal because it allows possible customers to view exactly what they will be getting when taking part in a DTC genetic test (Schleckser). As everything you do in life has risks so does DTC genetic testing. Some risks can include: “the uncertainty and probabilistic nature of results, the possibility of deeply troubling revelations, and concerns about genetic privacy or discrimination (Schleckser).” Once an individual has read and understood each risk and benefit that could come from DTC genetic testing they must purchase and mail their test so they can receive their results. One may ask if reading and understanding the test results can be difficult? The company, however, is ahead of the consumer on that due to them providing rich boundaries for showing the results in an innate format (Schleckser).

By the company putting the results in a user friendly format the company has received positive feedback regarding test results. The company performed a study including one thousand forty-six consumers. The consumers were asked to analyze two sets of test results and record their interpretations of them. From this ninety percent of the consumers answered the questions regarding the test results correctly (Schleckser). Meaning that consumers of 23andMe should be able to interpret their test results without the help of a physician. Another issue that people believe could happen without the counseling of a physician is consumers taking rash action in response to their test results. However, evidence shows that people do not act out in rash behavior from viewing their test results because they already understand that the results are probabilistic and do not determine that they will develop that disorder (Schleckser). Another similar issue is a concern among people that the genetic testing will cause psychological harm. A review in 2010 said that “no evidence of any unintended detrimental effects on motivation or mood (Schleckser)”. Recent studies did indicate that

DTC has minimal psychological impact. Minimal impact such as brief anxiety can occur following the viewing of a bad result, but the anxiety can begin to disappear within a year. The last concerning issue when involving a physician with DTC genetic testing is privacy distress. When involving a physician with genetic testing you are exposing privacy allegations (Schleckser). Involving anyone in your genetic testing can reveal information that one may not want anyone to know but himself or herself. Overall this article has many supporting facts regarding not leaving genetic testing up to the choice of the physician.