Saturday, March 04, 2006

Wrongful prenatal testing?

Have you heard of this "successful" wrongful birth suit in Ohio?

In Ohio and approved by their Supreme Court, there is a '"wrongful birth" suit against doctors by parents who say they would have aborted their child had they not been given inaccurate genetic counseling,' without considerations for the 'damages payable [which] should include the cost of raising the child through adulthood, plus pain and suffering, ' although 2 of the 4 justices felt that, too, was appropriate. As it is, the 4-3 decision limited such lawsuits to costs associated with a pregnancy and the birth of the child.

Okay, kinda, half way, mixed bag hooey on the decision, huh? Those justices really stepped up to the plate on that one. A fine line.

Although I'm not going on a rant, a quote in this article got under my skin: "It is simply a question of whether or not a person is better off dead than disabled," said Sen. David Goodman (R., Bexley). "I think it is an atrocious and unacceptable question to ask a jury or a judge, whether they should be playing God, basically."

There is now a bill in Ohio to try to give the medical profession the benefit of the doubt: "The Ohio bill protects doctors from suits alleging negligence in reading prenatal testings, failing to order such tests, or otherwise missing signs of trouble."

Further, "Six states, including neighboring Pennsylvania, have adopted prohibitions on wrongful birth suits brought by mothers, or "wrongful life" suits in cases brought by the children living with the defects."

"BACKGROUND: Helen Schirmer and her husband Richard wanted to have a child, but knew that Helen carried a genetic disorder known as Trisomy 22. While Helen did not suffer from the disorder, which causes mental retardation and multiple, severe physical disabilities, she knew there was a one-in-three chance that any child she bore would exhibit the active form, and that a son would be more likely than a daughter to do so....Specialists at the Children's Hospital Medical Center (CHMC) in Cincinnati who performed the test and interpreted the results informed the Schirmers that the fetus was probably female and exhibited the same inactive form of the Trisomy 22 trait as the mother....In September 1997, Helen delivered a son, Matthew, who was born with multiple, severe physical and mental impairments as a result of the active Trisomy 22 genetic defect. At the age of six, Matthew remained unable to speak, stand or crawl independently, and unable to feed, bathe or toilet himself. "

This Kentucky couple who used that Cincinnati hospital specifically wanted screen for a genetic defect that the mother has. That's not some shotgun blast diagnostic voodoo going on; that's one particular defect for which they wanted data. This case isn't just an oversight on broad, generic genetic testing. This is a case of error for one specific genetic disorder that could be passed on in some form. CHMC didn't even get the sex right.

I am guessing that the parents did chorionic villi testing and the medical professionals got the mother's tissue instead of the fetus' as the test indicated the same condition/gender as the mother. This should have been a red flag right away to practioners and, at the least, an amnio could have been done. Speculation, yes.

I do not see why a wrongful birth suit is wrong. It is as if parents of a fetus to not have the basic right to good, accurate healthcare. Why is this circumstance any different than any other medical malpractice? Negligence is negligence. And if one wants to argue that the fetus isn't a person, well, the parents are and they were the ones seeking care.

There is also a dilemma here regarding the personhood of a fetus. If this was a Republican bill (plus that one Democrat) in Ohio, it doesn't seem to add up with the common Republican and Religious Right agenda. (I realize the two are not necessarily the same.) Another fine line. If fetuses are all gifts worthy of being born, why are they not worthy of having competent healthcare and diagnostic techniques? And why are those doing testing on the fetus exempt from malpractice with mistakes?

If the bottom line is to not abort, then, honestly, R&RR should outlaw prenatal testing completely. That would be preventative in a twofold means: nobody would know about fetal anomalies until too late and nobody would be able to abort on that premise.

So watch out, ladies. They want your dildocams.

To be clear, tho, not all prenatal diagnoses are merely information on whether to abort or not. In the case of open NTDs, knowledge of that ahead of time ensures the proper team is available at birth. It also would indicate a c-section, as much of the damage done to NTDs is in the birthing process. See, R&RR, not all prenatal testing is bad.

Thank goodness Wal-Mart is helping to nip unwanted pregnancies in the bud. R&RR lost on that account. I'm glad, b/c it pains me to get NARAL emails all the time and feel so helpless.


DD said...

I agree that a fetus should have the best in healthcare, but for as much scientific advancements there are, there are no guarantee that any amount of screening will catch everything. I mean if a couple can sue for insufficient screening for serious defects, then what's to stop them for sueing when they discover baby is deaf; blind; or even just near-sighted and requires corrective vision?

Plus, can the parents who sued for inappropriate prenatal screening without a doubt admit that they would have term'd the pregnancy? Do we now need to sign agreements that if anything is wrong with the baby that may lead to the decision to abort, that we would have to follow-through once faced with indisputable facts?

Then there's the 16yr old crack-head mother who gives birth to a crack-dependent baby. Can she sue for the care necessary for such a child since she decided against an abortion? What if she put the baby up for adoption and the adoptive parents want to sue?

EJW said...

I feel so bad for these children. Maybe they're too disabled to be aware of what's happening, but how horrible of a parent are you, if you sue the state because your child isn't perfect?

There's a similar but critically different case here in Madison, WI. About 15 years ago, there was a large clinical trial testing early diagnosis and treatment of cystic fibrosis. This was an ethical minefield, but the IRB decided that it was OK to test all children at birth, but only tell half the parents of the results of the test. At the time, CF was not on the standard screening panel, which was the key to the ethical dilemma. The "black box" parents (called that because their results were kept in a black box until 5 years later) were not informed, so their kids wouldn't get treated until clinical diagnosis.

One family had a daughter born with CF, but they were a black box family, so they didn't find out until she was a couple years old and her doctor picked it up. At diagnosis, the mother was 8 weeks pregnant with daughter #2, who was also born with CF. When D#1 was diagnosed, the parents were informed of the trial.

They sued everyone they could, the hospitals, the medical schools involved, individual researchers, the NIH for funding it, etc. It all got thrown out except for one case against the private Medical College of Wisconsin.

Their argument is that if they had known D#1 had CF they would not have had another bio-child. Interesting, they chose not to abort D#2.

Also interestingly, the lead researcher told me that they did the stats on the possibility of being sued for wrongful birth, given the CF carrier rate and the "litigiousness" factor of out culture, and they figured 1 family out of the thousands involved would sue. They were exactly right.

Cricket said...

I erred in not saying that, but the children were my first thought, too.

I don't know the mental capacity of the son (born the same month as mine, exact same age), but a child with CF is generally there mentally.

Thanks for describing that case. I think the parents had more rights than they received. I don't appreciate they were a mere statistic in either the disease or legal minefield.

Off to baseball, then scouts and bowling. Long day for the insomniac.

Cricket said...

[out of order comment]

The main thing about this case is that it wasn't necessarily a screen for everything. The parents already knew what they were concerned about.

I am so sure it was a CVS sampling of maternal tissue. I remember talk of this several years ago (i.e., I'm not up on it now), but that contamination was a major concern.

Do practioners think they've gotten so good that errors are like this are impossible? In this case, with the offspring thought to be just like the mother, there is no excuse for the absence of further testing. That is a significant red flag.

DD, you go way off on a slippery slope talking about other disabilities and crack women, slippery unless there is a specific marker test widely available for blindness or deafness or crack fetus screening I'm not aware of. That's so far out in scope, what I posted about can't even touch and doesn't even relate.

This case was so specific. They said they would terminate, b/c the mother was well aware of the time bomb ticking with her inherited disorder. I can't doubt her resolve; all I can say is that she requested invasive testing to see inside. That is the first step in making such a difficult decision. They confronted it and didn't bury their heads.

When I worked doing prenatal testing, a nurse in the attached clinic refused to have our cutting edge MSAFP blood test done on her. I was completely baffled. I know people say they don't want testing done, b/c they wouldn't terminate, but as I mentioned, testing and preparation makes a huge difference in an open NTD-affected child's birth. I find that parent neglegent, honestly.