Your Baby's DNA and Informed Consent
By Suzanne Ito, ACLU
Imagine this scenario: You just had a baby. You might be a tad tired; in a bit of a stupor, perhaps. A hospital employee —maybe your doctor or nurse — hands you a 32-page pamphlet explaining what will be done with your baby's DNA sample after it's tested for disease. You accept the pamphlet.
What have you just done? If you're in the U.K., according to the Daily Mail report last week, you've just agreed to allow the British government to hold onto your baby's DNA sample indefinitely — and possibly use it for future forensic testing, genetic research and other unknown purposes.
So what does this have to do with you?
The issue of storing baby DNA after an initial screening for disease — without parents' consent — is a problem on our shores, too. The DNA of virtually every newborn in the United States is collected, usually via a blood sample taken from a prick to the baby's heel, and tested for certain genetic and other disorders.
Many states view this newborn screening as so important, they don't require medical personnel to get parents’ express permission before carrying it out. And in the happy afterglow following the birth of a child, few parents think to ask what happens to the blood sample after it's screened.
As you might imagine, DNA samples are valuable to different parties for different reasons. So it's now common for states to hold onto the blood samples for years, even permanently. Some states also use the samples for unrelated purposes, such as in scientific research, and give access to the samples — or even the samples themselves — to others.
But without informed consent — that is, telling parents how long the sample will be stored and if and how their baby's blood samples will be used in the future, and then the parents agreeing — abuses will inevitably follow.
In February, the Texas state health agency and Texas A&M settled a lawsuit brought by parents of babies whose DNA was stored indefinitely for undisclosed future research. The suit charged the storage and future research was a violation of the Fourth Amendment rights against unlawful search and seizure. Under the settlement, approximately 5.3 million DNA samples were destroyed.
And it was just last month that the Havasupai Indian tribe in Arizona settled an ongoing lawsuit against Arizona State University over misuse of DNA samples. The university had initially taken blood samples to research the prevalence of diabetes among Havasupai tribe members, but then they were used to research inbreeding, schizophrenia, and the tribe ancestors' origins in Asia. As you might imagine, this infuriated tribe members, who said that this is not what they donated the blood samples for. The tribe was awarded a $700,000 settlement, and their blood samples were returned.
Law enforcement also has an interest in DNA. We've blogged before about the FBI's ever-growing Combined DNA Index System (CODIS), a DNA database with more than 8 million offender profiles. Now, known criminals and newborn babies seem worlds apart, but not in Sweden:
In 2003, Sweden's Foreign Minister, Anna Lindh, was fatally stabbed in a department store. Police investigators did not find a match between the DNA left behind by the assassin and the national criminal database. So they turned to another DNA database, the PKU biobank, which has collected blood samples of all newborns in Sweden since 1975 as a medical resource. The police arrested a man who had been identified by the newborn screening DNA bank.
Earlier this month, the ACLU submitted comments to the Advisory Committee on Heritable Disorders in Newborns and Children, which issued a set of draft recommendations to the Department of Health and Human Services on national guidelines on the retention and use of baby DNA.
As science (and pop culture) finds more and more uses for DNA, it's crucial that everyone, not just parents, keep an eye on their genetic material and know how it can be used (and potentially abused.) This is an issue the ACLU is monitoring very closely, so stay tuned.