Uninformed Consent

by jeeg 12. February 2013 22:40
Last year, after years of writing about research studies, I agreed to become a research subject myself.   I agreed to allow a local medical center to use my tissue, health records, fluids, cells, and other “specimens” for research. Not only that – I also allowed the re... [More]

Newborn Screening in America: New report from CRG

by jeeg 21. September 2012 00:23
Before they are even a week old, ninety-eight percent of the 4.3 million babies born annually in the United States have a small sample of blood taken from their heels. These newborn bloodspots (NBS) are then screened by state agencies for a variety of inherited conditions and may later be stored in ... [More]

Irish plan to destroy million baby blood samples 'appalling'

by jeeg 5. March 2012 20:47
MINISTER FOR Health Dr James Reilly has decided to have more than a million archived blood samples taken from newborns destroyed within the next four to six months. Cardiologists have called on the Minister to reverse the decision, describing it as “appalling”. They say the sample... [More]

Court orders new constraints on newborn screening program

by jeeg 17. November 2011 01:37
A state health program that takes blood samples from Minnesota newborns to screen for more than 50 diseases and disorders can continue despite a legal challenge on genetic privacy grounds, the Minnesota Supreme Court ruled today. But in a ruling that reverses a lower court decision, the ... [More]

Most States Unclear About Storage, Use Of Babies' Blood Samples

by jeeg 28. March 2011 23:22
State laws and policies governing the storage and use of surplus blood samples taken from newborns as part of the routine health screening process range from explicit to non-existent, leaving many parents ill-informed about how their babies' left over blood might be used, according to a team led b... [More]

State sued over trading and selling of infant blood spots

by jeeg 9. December 2010 19:31
A federal class action lawsuit filed today in San Antonio claims the state “deceptively and unlawfully sold, traded, bartered, and distributed blood samples” from newborns in exchange for fees, lab equipment and other purposes. The suit was filed against the Texas Department of St... [More]

Study Finds Americans Willing to Join Database but Consent Issues Remain

by jeeg 3. September 2010 01:31
Most Americans are willing to have their genetic information shared in a national database, but they first want to be asked, researchers report. The new study included participants in the Adult Changes in Thought (ACT) study, a long-term project tracking age-related changes in thousands of pa... [More]

23andWho?: Consumer Privacy and “Internet-Enabled Human Genomics”

by jeeg 7. July 2010 00:27
In the June issue of PLoS Genetics, the direct-to-consumer corporation 23andMe.com published its first genome-wide association study (GWAS).  Examining the somewhat obscure traits of curly hair, the propensity to sneeze in sunlight, and the ability to smell one’s urine... [More]
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