Will you trust the government with your genes?
An interesting issue is discussed over at Eye on DNA: Newborn Genetic Screening vs Right to Privacy.
Basically, the big groups and associations of health professionals in the US are arguing that all newborns should be screened for 29 genetic disorders. Being a Federal Republic, this kind of notion or policy varies from state to state.
Some states have laws that mandate the genetic screening of a newborn, which of course parents can opt-out, while other states do it in reverse, parents can opt-in to have their newborn screened for genetic disorders.
Both have disadvantages and advantages, if the screening is required by state laws, almost all babies are checked and so given the right medical attention accordingly. However, if it is not required less newborns are screened, less genetic disorders are discovered early on and so less infants recieve the medical care they need to.
Either way it’s well and good. Both scenarios offer a compromise between your right to genetic privacy and your right to recieve medical attention as a tax-paying citizen.
So what’s all the fuss about? It all boils down to what is to be done or being done to the blood samples after they have been tested. Do they get destroyed or kept on for future (read: reasearch) uses?
Privacy stalwarts would argue that it’s a big No-no because what the government is left with is a pieace of the actual genetic material from the newborn, the screening being done, the government or hospital authorities are basically free to do what they want with it. In the most sincere of intents, use it for further genetic research that will benefit the general public.
However, it is the government and as commenter Yvette points out; I think the public may be wise to mistrust this motivation in the area of genetic health given the government’s track record with its citizen’s health generally.
So now we have a dilemma, should we require that all newborns be screened or not? Should we allow government to keep our health records and actual genetic material?
More on genetics, drop by Froodee where today I briefly talk about pregnancies, genetics and tofu.
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