https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access/ They were shocked when KPIX reporter Julie Watts explained it to them. The Newborn Genetic Screening test is required in all 50 states Nearly every baby born in the United States gets a heel prick shortly after birth. Their newborn blood fills six spots on a special filter paper card. Even though the parents pay ... the child's leftover blood spots become property of the state and may be sold to outside researchers without the parent's knowledge or consent. "I just didn't realize there was a repository of every baby born in the state. It's like fingerprints," new mom Soniya Sapre responded. stores the remaining blood spots for research indefinitely in a state-run biobank "Blood is inherently or intrinsically identifiable 500,000 births a year,more than 9.5 million blood spot samples have been collected since 2000 the program reported $128 million in revenue during the last fiscal year alone, mostly generated by the fees parents pay for the test. Parents are charged around $130 on their hospital bill there is the potential for outside researchers to profit off your child's genetic material. "Do any of those studies result in something that the company can make money from?" reporter Julie Watts asked Lorey in a recent interview. "Could they create a test or treatment that they ultimately profit from?" "Theoretically, yes," Lorey admitted. not all, of these researchers that have made requests are scientific researchers." So there is no possibility a researcher may request blood spots for a specific research experiment … but then keep blood spots without the department's knowledge to be used for other purposes?" she asked. "I want to say no" he said. "But I'm not ready to say no because I know how humans can be sometimes." Due to biological variability of newborns and differences in detection rates for the various disorders in the newborn period, the California Newborn Screening Program will not identify all newborns with these conditions. While a positive screening result identifies newborns at an increased risk to justify a diagnostic work-up, a negative screening result does not rule out the possibility of a disorder. result should not be considered diagnostic, and cannot replace the individualized evaluation and diagnosis of an infant by a well-trained, knowledgeable health care provider. re-identified for various reasons We found at least five search warrants and four court orders I think the storage of DNA for purposes other than medical research without informed consent clearly is violating ... What are they trying to hide?" "blood specimen and information," collected during a test paid for by the child's parents, becomes "property of the state. If hospitals and the medical complex is so concerned that if we knew that we might not donate our samples, than we absolutely need to know what they're doing with them because it suggests there is a purpose beyond what we know. none have shown any interest in giving parents the right to opt out For all the abuse by the system only 0.16% of them test positive, fewer truly escape significant quality of life issues, even fewer are cured. https://wikipedia.org/wiki/Newborn_screening#Society_and_culture Have your babies at home the old fashioned way. Demand all test samples get returned for your own destruction and no DNA or other tracer be retained.. Pay for private, non state, tests. Raise bloody hell. Startup your own private testing companies, offering sliding cost menus from total privacy to full sellout. https://www.youtube.com/watch?v=BpzVFdDeWyo infohash: 3B33BC5DC0EB29150A55D4EAAB0E6EE7B201EFEA infohash:73888C8F4956FB91F41101828C685D4B8120E205