Proposed Policy to Control the Quality of Direct-to-Consumer Genetic Testing

Sarah Don 2009 Direct-to-consumer genetic testing is becoming increasingly popular. For the cost of any other simple x-ray, a person can receive a personal genetic profile that can provide detailed information about a person’s predispositions to developing certain diseases throughout their life. However, there are many ethical dilemmas to do with such commercialized testing that perhaps a national policy concerning the control of direct-to-consumer genetic testing should be implemented. Perhaps the government could implement a policy to control the quality of the testing that is conducted in the direct-to-consumer genetic testing laboratories and that the recipients of genetic profiles be provided with extensive education and counseling and require a referral from a general practitioner. It is a person’s right to have freedom of information about themselves, and if they request a genetic profile, it should be accurate in order not to cause grief, and they should also be able to understand and appreciate what the results mean. In Bridget M. Kuehn’s article entitled Risks and Benefits of Direct-to-Consumer Genetic Testing Remain Unclear, published by the American Medical Association in 2008, the issues and dilemmas involved in direct-to-consumer genetic testing are discussed in depth. Kuehn says, “…uncertainties about the validity and clinical implications of such results raise the question of whether marketing these tests to consumers in premature.” (Kuehn, 2008) However, a policy that requires quality control of test results should at least ensure that the consumer receives accurate information about their genome. Several issues involved in direct-to-consumer genetic testing include negative psychological effects, clinical value, consumer understanding and appreciation, and commercialization. With this proposed policy, hopefully such issues can be minimized and controlled. If a person requests a genetic profile, what do they do with that information? If the genetic profile suggests that they have an increased risk of a particular disease such as breast cancer, then that person can schedule more frequent scans and take the precautions necessary to find any cancer that may develop while it’s still in its early stages. However, knowing such information could cause a lot of worry and psychological distress when the risk may be only very low. However, if there were an error in the genetic profile and a person thought they may have an increased risk when in fact they really don’t, it could lead to unnecessary and unfair stress and worry. Similarly, if an error in a genetic profile suggests a very low (or no) risk of developing a certain disease, that person may decide not to take any precautions at all (such as regular mammograms to prevent the development of breast cancer). So the people at the consumer end of direct-to-consumer genetic testing really need to be educated about how to understand their genetic profile. A genetic profile should only be handed over to the recipient once they’ve received consultations from their general practitioner or a doctor from the company that conducts the genetic testing. It is important for recipients of genetic profiling to understand what the genetic markers are, what they mean, and what having increased risk of developing a certain disease means and how to deal with it.

However, finding out that one has a predisposition to the early development of an untreatable and unpreventable disease such as Alzheimer’s could be extremely distressing and depressing, causing more stress on that person’s health. If a person is considering applying for a genetic profile, they must ask themselves, if they find out some information about their genome that they can’t control, would they really want to know? The states of New York and California in the U.S.A. have already implemented a policy requiring a referral from a general practitioner before a person can receive a genetic profile. This still allows the direct-to-consumer genetic testing companies to operate as a business, however, it controls the number of applications and gives the general practitioner a chance to explain to their patient what the results mean in order to ensure that reckless behavior doesn’t occur as a result of misinterpreting the results. Due to the growing curiosity in scientists as well as the general population about our genetic coding and what it means, more and more people opt to have their genome profiled. Not everybody wants to know what their genetic markers for certain diseases are, but for those that do want to know, they should be able to have access to the resources to return a result as accurate as possible. The proposed national policy that, the testing that is conducted in the direct-toconsumer genetic testing laboratories is of high quality and the recipients of genetic profiles be provided with extensive education and counseling and require a referral from a general practitioner, should ensure recipients of genetic profiles with more reliable and accurate results.

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