According to Recommendations from HHS, the newborn DNA of children is a valuable resource that should be banked by government and made available to researchers without parent consent. Citizens' Council on Health Care has responded in opposition by sending public comments to HHS.
CCHF responds to HHS Request for Public Comments on “Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening,” – a Briefing Paper issued April 26, 2010 by HHS through the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
Texas began storing newborn DNA, collected for the newborn screening program, in 2002 without parent consent. A recent lawsuit against the State was settled, forcing Texas officials to destroy the 5.3 million infant blood spots in storage.
The Texas Department of Health should never have stored or analyzed the DNA and unique genetic codes of its newborn citizens. It is only right that they destroy the genetic information that they have stored and given to researchers without legal authority or the consent of parents.
Increasingly, the specter of eugenics has emerged over State government newborn genetic screening programs. For example, The Changing Moral Focus of Newborn Screening, the December 2008 report issued by The President’s Council on Bioethics, states: “...At what point have we crossed the line from legitimate family planning to capricious and morally dubious eugenics?"
Unless the Administrative Law Judge chooses otherwise, the Minnesota public will be at the mercy of the Health Department's warehousing, data-mining, tracking, research and health care rationing agendas. Their private data will be warehoused in the State of Maine and placed online. They won't have had a choice—or a voice.
Not without my Permission: Parents' Willingness to Permit Use of Newborn Screening Samples for Research
Background: State newborn screening (NBS) programs are considering the storage and use of NBS blood samples for research. However, no systematic assessment of parents’ attitudes exists. Methods: We conducted an Internet-based survey of a nationally representative parent sample. We examined parents’ willingness (1) to permit use of their children’s NBS samples for research with/without their permission and (2) to allow NBS sample storage. Using bivariate and multinomial logistic regression, we examined the asso ciation of parent and child characteristics with parents’ willingness to permit NBS sample storage and use for research, respectively. Results: The response rate was 49.5%. If permission is obtained, 76.2% of parents were ‘very or somewhat willing’ to permit use of the NBS sample for research. If permission is not obtained, only 28.2% of parents were ‘very or somewhat willing’. Of parents surveyed, 78% would permit storage of their children’s NBS sample. Parents who refused NBS sample storage were also less willing to permit use of the NBS sample for research.
Specifically, a Tennessen Warning requirement [to tell individual how their data would be used by the Dept., whether they have to provide it, etc.] would not be workable for the reporting of communicable diseases or related specimens or for the collection of many other types of public health data or specimens. There may be other privacy protections or some sort of modified Tennessen Warning, but they would have to be tailored to balance MDH's responsibility to protect public health with the individual's privacy. The goal would be to maximize public health protections while minimizing any intrusion on personal privacy.