Genetics

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.

A Critical Analysis of Proposed 'Newborn Screening Saves Lives Act of 2007'

Genetic privacy, parent consent and individual self-determination rights are at stake with the U.S. Senate’s recent passage of S. 1858, the ‘Newborn Screening Saves Lives Act of 2007.’ This paper outlines five key issues of concern.

Why Patient Consent Should be Required for the Governor's Genetic Research Proposal

What Consent? - MN's Medical & Genetic Research Law

Minnesota state law denies most consent rights for patients regarding use of their individually-identifiable medical records for medical research. UPDATE: Until the Minnesota Genetic Privacy Act passed in 2006, Minnesota law was silent on collection, storage use and dissemination of genetic information for genetic research. States are not preempted by federal law from passing stronger, more privacy-protecting laws.

England considers DNA profiling at birth

The initiative will begin with wider antenatal screening. But soon babies could have their genetic profiles recorded at birth, to spell out their individual inherited risks of disease later in life.

Newborn Screening

Thus far, the state of Minnesota has illegally collected and claims ownership to the DNA of 780,000 children (soon to be voting adults) and has provided the DNA of 42,210 children to genetic researchers without parent consent. Approximately, 73,000 children are born in Minnesota every year. About 4.2 million children are born across the nation. All of them are losing their genetic privacy and DNA ownership rights. Listen in to an interview of Twila Brase, president of CCHC, as she discusses what's at stake for all citizens in the pending legislation.