Tag Archives: dna testing

Public records shed light on Texas blood samples

The Texas Tribune‘s Emily Ramshaw got her hands on almost a decade of public e-mails that help show the thoughts and intentions behind the state’s decision to store infant blood samples without parental consent. She also uncovered a previously undisclosed “transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA (mtDNA) registry.”

baby-heel

Photo by valleyboy74 via Flickr

Ramshaw published PDFs of the e-mails alongside her story (E-mails, part 1 | E-mails, part 2).

Ramshaw’s report follows officials’ intricate dance around the issue of parental disclosure, as well as their reluctance to publicize the warehousing of the blood samples. Here’s her summary:

For decades, the state has screened newborns for a variety of birth defects, pricking their heels and collecting five drops of blood on a paper card. Until 2002, the cards were thrown out after a short storage period. But starting that year, the state health department began storing blood spots indefinitely, for “research into causes of selected diseases.” Four years later, DSHS began contracting with Texas A&M University’s School of Rural Public Health to warehouse the cards, which were accumulating at a rate of 800,000 a year. State health officials never notified parents of the changes; they didn’t need consent for the birth-defect screening, so they didn’t ask for it for research purposes. The agency’s rationale was that it let parents who asked opt out of the newborn blood screening and de-identified all of the samples before shipping them off.

According to Ramshaw’s sources, baby blood spots are “incredibly valuable” to researchers, and can be useful even when stripped of all identifying information. Yet public perception doesn’t line up with this scientific value in part, Ramshaw says, because scientists are unwilling to even try to explain the use of blood spots because it’s such a controversial topic.

Fortunately, Ramshaw writes, the first steps toward educating the public are now being taken. Parents are being asked for their informed consent when the blood samples are taken, and the state health agency has made a clean break with the past by destroying the earlier blood spots collected without full consent.

Reporter joins DNA risk-analysis study

VoiceofSanDiego.org‘s Randy Dotinga took part in the growing trend of using genetic analysis to determine risk levels for certain diseases. Dotinga wrote one story after the test itself, and another after his results came back. Dotinga learned that he may be more inclined to pick up colon cancer and a little less likely to get Alzheimer’s. In the process, he also learned that nobody really knows just how useful these tests are.

That’s where Dotina and about 2,600 others come in. In exchange for deeply discounted genetic tests, Dotinga and other test subjects will fill out regular questionnaires for the next 20 years of their lives. The study aims to find out just what folks do with information gleaned from genetic testing, as well just how accurate the testing is.

To hear Dotinga tell it, genetic testing seems similar to regular cancer screenings, in that the benefit in early detection of problems may be outweighed by the cost of testing and the detection of harmless problems and the unnecessary procedures that may result.

“If you get back a report saying you are at risk for 10 things, you have 10 to-dos,” said (Jason Bobe, director of community for Harvard University’s Personal Genome Project). “You may spend a whole bunch of money on a diagnostic odyssey to see if you have these conditions. Along the way, we may save a lot of lives, but spend a lot of money on people getting unnecessary medical care.”