If the United States was the King’s court, California may be its jester- a state where popular referendum rules, where hulking actors and internet flea market CEOs vie for governorship, the home of Beverly Hills cops, scientologists, daisy dukes, and a host of other ridiculous phenomena. It comes as no surprise then that California may be in serious violation of certain guiding bioethical principles.
After a child is born in California, doctors dab a few drops of blood on a blood card to test for 77 genetic diseases. As necessary as these life-saving tests are, parents wonder why the genetic material is being kept by the state as property indefinitely. The cards are shuttled after the tests to scientific researchers who store the genetic material in a databank. California now has an inventory of 15-million cards that can be used later when necessary for “research, lawsuits, and investigations” (KTVU). From the state’s perspective, if the option is available, it sees no trouble in availing it for a good cause. Furthermore, doctors notify parents about the blood cards in paperwork they read after the delivery.
Unfortunately, that doesn’t quite cut it for a lot of parents. Diana Oros recalls, “They might have given me a piece of paper, but it was right after birth. We were tired. There was so much going on we didn’t have time to read anything.” Though the doctors tried to receive ‘consent,’ it was clearly far from ‘informed.’ Some parents like Alvin Ziegler were “outraged” when they found out about the practice.
Fred Lorey of the Genetic Disease Screening Program quips that if there is any issue, “we’ll destroy it. We’ll even send it back to you if you prefer.” There may be some truth to his sardonic jab at these parents’ indignation, but nothing can replace the necessity of open communication and a respect for people’s autonomy in the medical world. Without informed consent, doctors fail to respect the parents’ role as proxy for their children. That feeling of inadequacy in caring for one’s young can be damaging, and it’s no wonder that fathers like Ziegler react so vociferously. This is not an issue with the genetic tests themselves, and privacy rights are not the issue at hand either since these blood samples are being used for good. Instead, doctors should take greater precautions before rushing DNA to a database. But what do you think? Is privacy perhaps the greater issue here? Is informed consent a model we should follow depending on the situation? In this case, would it just be innane to adhere so religiously to an ideal?
Since informed consent has become such an integral part of the bioethics dialogue, researchers need to make sure parents understand what exactly is being done with their newborns’ blood samples. California should realize soon that that knowledge is imperative; to claim otherwise would be foolish.
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1 comment:
"Diana Oros recalls, 'They might have given me a piece of paper, but it was right after birth. We were tired. There was so much going on we didn’t have time to read anything.'"
As you say Kash, the main issue here is proper informed consent of the parents, and it definitely seems that in the current setup in which consent is sought immediately after birth, the parents are not given enough time to make a well-informed and thought out decision regarding whether or not to allow this blood card to be taken. I think there's a very simple solution though. The state should just mandate that doctors inform expectant parents of this option well before birth, when treatment for pregnancy first starts. This would give parents enough time to inform themselves about what genetic diseases will be tested for, how and how long the cards will be stored, and anything else they might wish to know, thus allowing them to reach an informed decision.
I'm not sure whether or not this is true, but perhaps it is the case that parents are not allowed to act as legal guardians of their child until the child is actually born. In this case the parents would not be allowed to actually authorize the blood card until the child is born, but they can and still should be informed about the procedure well before birth, and then simply sign the forms once the child is born. Also, if this is the case, then perhaps the law should be changed to make parents legal guardians of their children starting from birth (though this gets into the debate of when their embryo/fetus actually becomes a human child), allowing them to avoid the hassle of signing any paperwork when the child is born.
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