Proposed Policy to Control the Quality of Direct-to-ConsumerGenetic Testing
Sarah Don 2009Direct-to-consumer genetic testing is becoming increasingly popular. For the costof any other simple x-ray, a person can receive a personal genetic profile thatcan provide detailed information about a person’s predispositions to developingcertain diseases throughout their life. However, there are many ethical dilemmasto do with such commercialized testing that perhaps a national policy concerningthe control of direct-to-consumer genetic testing should be implemented.Perhaps the government could implement a policy to control the quality of thetesting that is conducted in the direct-to-consumer genetic testing laboratoriesand that the recipients of genetic profiles be provided with extensive educationand counseling and require a referral from a general practitioner. It is a person’sright to have freedom of information about themselves, and if they request agenetic profile, it should be accurate in order not to cause grief, and they shouldalso 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 TestingRemain Unclear
, published by the American Medical Association in 2008, theissues and dilemmas involved in direct-to-consumer genetic testing arediscussed in depth. Kuehn says, “…uncertainties about the validity and clinicalimplications of such results raise the question of whether marketing these teststo consumers in premature.” (Kuehn, 2008) However, a policy that requiresquality control of test results should at least ensure that the consumer receivesaccurate information about their genome.Several issues involved in direct-to-consumer genetic testing include negativepsychological effects, clinical value, consumer understanding and appreciation,and commercialization. With this proposed policy, hopefully such issues can beminimized 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 particulardisease such as breast cancer, then that person can schedule more frequentscans and take the precautions necessary to find any cancer that may developwhile it’s still in its early stages. However, knowing such information could causea 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 theymay have an increased risk when in fact they really don’t, it could lead tounnecessary and unfair stress and worry. Similarly, if an error in a genetic profilesuggests a very low (or no) risk of developing a certain disease, that person maydecide not to take any precautions at all (such as regular mammograms toprevent the development of breast cancer). So the people at the consumer endof direct-to-consumer genetic testing really need to be educated about how tounderstand their genetic profile.A genetic profile should only be handed over to the recipient once they’vereceived consultations from their general practitioner or a doctor from thecompany 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 howto deal with it.
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