Did you know that many states collect DNA samples of newborns and store them indefinitely? Well, these parents didn't:
When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.
While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing.
It's simple, the pediatrician answered: 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, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.[...]
"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."
They're right to worry. In the US, a diagnosis is a dangerous thing. The wrong one at the wrong time can kill you. Since cystic fibrosis is a particularly expensive chronic illness, private insurers look for reasons to deny coverage to people who have it. Consider the result:
"As we spoke to family after family," she continued, "it became clear that people with all types of medical conditions are quite worried about access to health insurance and they make life changes in order to preserve their access to insurance. People with genetic conditions may face additional challenges, however, and that is worth further examination."
Kass, who is with the Johns Hopkins Berman Institute of Bioethics in Baltimore, and colleagues came to these conclusions after interviewing adults or the parents of children who had sickle cell disease, cystic fibrosis, diabetes or HIV. They also interviewed 200 people with, or at risk of, breast or colon cancer.
Of 587 respondents, 27 percent reported they were denied health insurance or offered insurance at a prohibitive rate. Those with cystic fibrosis or sickle cell disease were twice as likely to report this as those with non-genetic conditions.
Some insurers even exclude people with cystic fibrosis as part of their official policy:
To exclude people they deem poor risks, insurers today use sophisticated techniques. They can tap into databases that reveal your past prescriptions and use "predictive modeling" - a complex, computerized algorithm - to estimate how likely it is that your medical bills will exceed the amount you pay in premiums. Every insurer has its own list of medical conditions for which it may charge higher premiums (have you ever been treated for anxiety, an eating disorder, an ulcer, fibroids or even irritable bowel syndrome?) or, in some cases, nix coverage.
An Aetna field guide for underwriters, for example, lists 71 serious conditions - including insulin-dependent diabetes and cystic fibrosis - for which it typically refuses coverage automatically. More than 50 others are not excluded by rote but might affect coverage decisions, depending on your case history. HealthNet, another insurer, notes that migraine sufferers are sometimes covered. If you haven't taken a prescription medication in a year or visited the emergency room in two years, you get a preferred rate. But if you have, you will either be charged a higher premium or declined altogether.
If their daughter had cystic fibrosis, whichever parent whose insurance she was on wouldn't be able to lose their job. If they wanted to take a risk, quit their job, and start a small business and contribute to the world through innovation and entrepreneurialism, they'd have to under stand that they'd be putting their daughter at risk of being denied coverage for all the treatments she needed. If that parent was self-employed or worked for a small business, they'd probably have the price of that coverage hiked so high they'd have to drop it or lose their job.
After their daughter leaves her parents' health care coverage, she'd probably be denied further coverage unless she was unemployed and went directly on Medicaid, which she may have to do just because of her disability.
While there are definite privacy concerns with storing this sort of genetic information, the mere act of doing that sort of test without any sort of consent is simply reckless. But the bioethicist interviewed for the CNN article, who was critical, sounded hopelessly out of touch with reality.
Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first ask permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says.
However, he added that storage of DNA for long periods of time is a different matter.
"I don't see any reason to do that kind of storage," Caplan says. "If it's anonymous, then I don't care. I don't have an issue with that. But if you keep names attached to those samples, that makes me nervous."
That's great for the professor who works at a large state university and probably isn't all to concerned with coverage, but that initial diagnosis isn't part of the "overriding state interest" in helping babies. Actually helping those babies survive longer is in the state's interest, and recklessly genetically testing everyone will put some babies at risk for dying as lacking health insurance, in the US, kills.
I'm thoroughly convinced that this isn't the system even a significant minority of Americans want, where being diagnosed with a disease, any disease, can put people at risk of being denied medical treatment (in a sane universe, the opposite happens).
But considering the massive amount of misinformation that there is out there on health care policy being pumped into the citizenry's minds without much substantive disagreement from liberals and leftists, most people don't know either how bad the system is, that is can be much better than it is, or what to do to go about fixing it. (Plus Congress doesn't even care much about public opinion anymore and has already been bought and paid for by the people who profit off denying children with cystic fibrosis access to medications.)
Did anyone in Isabel's state protest when the government decided to do routine genetic testing on babies? Were the state legislators rubbing their hands sinisterly, knowing that they were giving valuable information over to health care providers so that they could commit the correct murders-by-spreadsheet to cut "medical losses" and increase profits? Or did everyone just think it was a nice idea for parents to know about their kids' genetic problems and didn't even think about how it would play out in a country with a broken health care system, and no one was willing to remind them?
Most likely they didn't even consider that, and discussed instead the privacy concerns that the bioethics professor was worried about and tried to minimize them. They live in a quaint little world where they get their insurance through the government so they can ask the bigger philosophical questions and do what's right by children.
Wouldn't it be nice if the first question people thought about when they hear about routine medical testing was philosophical instead of economic?