Genetics

Texas Department of Health to destroy newborn bloodspots to settle parent lawsuit

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.

CCHF Reports on Newborn Screening Nationwide

Newborn Genetic Screening - The New Eugenics?

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?"

RE: CCHF Letter Opposing MN Collection of Patient Medical Records

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.

"Genetic Information in Minnesota" - Dept of Admin Report

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.

MN Health Dept Comments on State's Genetic Info Report

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.

Attorney's Minority Report to MN Genetic Info Report

CCHC Submits Genetic Information Minority Report

In response to the “2009 Genetic Information Report – DRAFT Version Two,” this report was submitted to Commissioner Dana Badgerow, Minnesota Department of Administration by Twila Brase, RN, PHN, Member of the Minnesota Genetic Information Work Group and President of Citizens’ Council on Health Care, January 2009

The Untold PKU Story Challenges Newborn Screening Mandate

Newborn screening advocates often refer to the newborn PKU (phenylketonuria) test as evidence of the benefit of screening—and as a rationale for compulsory testing of newborns nationwide. However, a brief look into the history of PKU testing challenges these assertions. Inaccurate test results, harmed children, untested treatments, and an increase in mental retardation mark the untold PKU story.