This shit... I was suspicious when they were taking samples of my newborn's blood for a fairly rare disease. My first thought was, I bet they're creating a DNA database, the fuckers. So I decided to research it out of curiosity and yup........
I found one site that said almost all states are doing it.
Important news was issued yesterday on the legislative battle over the State collection of genetic material on newborn babies to use for government-endorsed genetic research without parents’ consent. Last night, the Minnesota Senate Judiciary Committee voted against consent rights (ownership) of infant blood and DNA, reported Twila Brase, RN, President of the Citizens' Council on Health Care. That means DNA material on children can be stored and used by the government or third parties without the consent of parents. The bill (SF 3138) now goes to the Senate for a full vote.
This is a complicated issue of medical ethics and privacy, public health over individual rights, the integrity and advancement of science, genetic discrimination, and the potential abuses of genetic information by the state. As reported last year, the CCHC had discovered that for ten years, the Minnesota Department of Health had been illegally collecting DNA material on at least 780,000 babies which it was storing indefinitely, and has already given away the material on more than 41,000 babies for genetic research, all without the knowledge or consent of parents. Since then, the CCHC has been working for informed consent and arguing that the state cannot take or use genetic material without parents’ consent. The CCHC has cautioned that the state’s genetic database will soon be linked electronically to its medical database, with a permanent impact on patient records and genetic profiling that could be used against people by insurers or employers. Few parents are even told of their rights or given the option to opt-out of testing or allow testing, but require the blood sample to then be destroyed and not retained by the state.
No one is arguing against saving the lives of babies or preventing the devastating effects of genetic and metabolic conditions. These can be the benefits of screening programs that accurately identify conditions which have effective treatments. [For an overview of newborn screening tests, some of the metabolic and other conditions included, and the value for babies and parents, the March of Dimes offers a parent guide here.]
But we almost never hear the downsides, the past history of failures of screening programs, the problems and reliability. With advances in technology making new forms of genetic screening possible, despite limited understanding of the risks or accuracies; the ability to detect growing numbers of conditions for which there may be no effective or necessary treatment; the ability to pick up abnormalities that we may have no understanding of what they mean or that might never cause a medical problem; the growing commercial interests in using genetic technology and the potential for abuse; it is imperative for us to think about this. Now.
National agencies and interest groups under the National Task Force on Newborn Screening have recommended a mandatory federal government-run uniform newborn screening program that is integrated with the health care delivery system and under public health agency oversight. (It would be administered through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), Centers for Disease Control and Prevention (CDC), Health Care Financing Administration (HCFA), Agency for Healthcare Research and Quality (AHRQ), National Institutes of Health (NIH), and other agencies.) They argued against parental informed consent, in the interests of public health. Their other recommendations included the development of public health databases integrated with the newborn screening system and genetic data collection. Along with the push for nationalized electronic medical records and the government’s proven inability to not allow the healthcare system to be overtaken by commercial interests, this deserves our attention before we’ve tumbled down the proverbial slippery slope.
According to the Task Force, 49 states require newborn screening, but only 3 states have provisions for informed consent. Maryland has a voluntary newborn screening program, Wyoming uses an informed consent model and Massachusetts recently began using an informed consent process in a pilot program. Most states, it found, permit parental refusal, but only under limited circumstances. However, parents are rarely told that refusal is even an option, and mandatory offering of screening is often confused with mandatory screening.
cont...
http://junkfoodscience.blogspot.com/2008/03/do-you-own-what-makes-you-you-or-does.html
