Routine DNA Tests For Newborns Mean Looming Privacy Problems

pogopop77 writes "CNN has an interesting story about how newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent. However, many states store that DNA information indefinitely, and even make it available to researchers with little or no privacy safeguards. Sometimes even the names are attached! Here is information on state-by-state policies (PDF) of the handling of the DNA information."

Re:GATTACA

[MRe_nl]

http://www.genome.gov/10002328 [genome.gov]

What's the Genetic Information Nondiscrimination Act (GINA)?

The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.

Their logo even has "GATTACA" in it.

Baby DNA should be like baby fingerprints

[davidwr]

Parents SHOULD get their babies tested for major genetic illnesses, they SHOULD get their kids fingerprinted and footprinted, and they SHOULD have current dental x-rays and photographs available.

But the parents should be the only ones who have long-term copies of this data.

By the way, many public school systems keep photographs of children long-term - your kid's high school probably has his kindergarten photo in the kid's "permanent record." Schools usually destroy "permanent records" several years after graduation, keeping only transcripts and basic demographic data e.g. race, gender, name, birthdate, student ID# (which may be the SS#), last known address, etc., ditching all or almost all conduct and academic records that aren't on the transcripts.

Recent Experience

[WorkingDead]

My wife and I recently had a baby in Texas and found out about this. The blood sample is taken by pricking the babies heel 24 hours after birth and placing five drops of blood on a five panel card. The state of Texas requires that the samples be sent to a state lab and screened for congenital adrenal hyperplasia, congenital hypothyroidism, galactosemia, phenylketonuria, sickle-beta thalassemia, sickle-cell anemia, and sickle-hemoglobin C disease (http://www.dshs.state.tx.us/LAB/nbs_article.shtm). Luckily they give you a form you can fill out when you leave the hospital to request the state to destroy the sample after their screening. There seems to be some personal information attached to the sample so that the state can link it back to the hospital record should they detect something. They don't appear to be able to match the sample to a SSN# because that doesn't get issued to the baby until several weeks later. I made sure to fill out the form and mail it in but there doesn't seem to be any way to tell if they really destroyed the sample or not. By not filling out the sample destruction request form you give the state permission to do what ever they want with it but they are supposed to remove any identifying information if they give the sample to a third party.

Re:names egregious, but not relevant

[neurogeneticist]

If you just pick 24 random SNPs, they may not be particularly informative for your population (i.e. they may be monomorphic or have very low minor allele frequencies that don't help you discriminate individuals). So you want to pick markers that are bi or even tri-allelic with high MAFs for your population, to make sure they vary enough from person to person to tell them apart.

From someone who understands the problem

[Anonymous Coward]

You, and your lovely wife are both missing the point.

It isn't about what the law says is legal, or even about what people are doing with the data right now.

It takes a long time to build this sort of database, and create the mechanism by which outside agencies can access the data, but it is relatively quick to put the legislation in place (if you wait for the right moment). Once the system is there, the legislative changes will follow at some point.

If you make it easy for an organisation to do something, then they are a lot more likely to do it. For example, if you were to stick network cameras in everyone's homes, with the restriction that the police were not allowed to access them, sooner or later, the law will change. If the cameras aren't installed in the first place, it would remain a lot more difficult to implement the system and the authorities would have a fight on their hands.

Got that? Nothing to do with what is or is not legal. Everything to do with allowing them to put a system in place which will make it a trivial task to implement full access at a later stage.

Re:names egregious, but not relevant

[tOaOMiB]

To clarify, you want each of your markers to carry maximum information. SNPs are the easiest/cheapest markers to genotype, and represent positions in the genome where some chromosomes in the population have one nucleotide (e.g. G, one of the alleles) and others have a different nucleotide (e.g. T, the other allele). (I say chromosomes instead of people, since people are diploid and will have 2 copies of each chromosome. Diploid genotypes are then GG, GT, or TT for a G/T SNP). To maximize information, you want to choose a SNP where the probability of these genotypes is relatively even--maximized if the proportion of G's and T's in the population are equal, leading to 25% GG, 50% GT, and 25% TT.

While the parent is correct that 24 SNPs is sufficient in a given population, in practice it's probably hard to choose 24 SNPs that cover ALL populations in the world well (since a SNP with a high minor allele frequency in, say, Europeans, may not have a high minor allele frequency in Asians, or Indians, or Australians...

Re:GATTACA

[Quikah]

General Welfare clause is a perfectly reasonable justification to the constitutionality of federally run healthcare.