Got my ire up!

iVillage Member
Registered: 02-04-2008
Got my ire up!
77
Wed, 04-16-2008 - 3:52pm

Ther more I think about this, the more upset I am getting... must share.


I went to the building in which my sister (Shannon) works to tend to a client account.

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iVillage Member
Registered: 03-06-2008
Fri, 04-18-2008 - 3:12pm
iVillage Member
Registered: 04-10-2003
Fri, 04-18-2008 - 3:13pm

They asked <

You replied <>

As compared to a HEALTHY child? I think someone would have to be in denial to to find having a child with fetal anomalies preferable to it being a healthy one. But i did see some of that at our county MR/DD- perhaps it makes it easier to deal with in the long run.

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iVillage Member
Registered: 06-17-2007
Fri, 04-18-2008 - 3:14pm

"Since medical records are confidential, how would they find the names/addresses of women that aborted after prenatal testing?"

How does any researcher find anyone then, if they must only use the most tangential connections? Instead of just reading my first sentence, try reading the rest of it. In the rest of that paragraph, you'll find my comment that a partnership could be formed between the researchers and a hospital network such as mine (which cares for hundreds of thousands of women each year). The doctor, while caring for the patient, could ask if the patient would be interested in participating in a study designed to find ways to better improve the patient information process.

"I don't think that most people would support the idea of the doctors or clinics releasing that information."

I want to make sure that you understand me- I am not advocating the doctors or clinics giving this information without the patients' knowledge or consent. That said, you make the assumption that these women would not want their voices heard, but you don't know for sure. Beyond that, the majority of women contacted through the DS parent group didn't respond either. That doesn't mean that no one would. I, for one, enjoy being a part of studies or focus groups that want my opinion.

Heck, even if this didn't work, they could advertise on bulletin boards at clinics, doctor's offices, hospitals, colleges, or use television, radio, the internet- wherever people seeking study participants usually go. There are myriad opportunities for the researchers to find women who received a prenatal DS diagnosis and went on to abort. The first one I suggested is probably the most effective, but these other avenues must also work at least to some extent; otherwise, all the research firms wouldn't use them.




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iVillage Member
Registered: 04-10-2003
Fri, 04-18-2008 - 3:25pm

<>

Had my last had a fetal anomaly and i decided to abort, it would have been the same OB/GYN practice in the SAME hospital a I had the D&C after my miscarriage. Since they had access to my info for studies when I miscarried, I'm betting the same access would have been granted for this.

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iVillage Member
Registered: 01-29-2004
Fri, 04-18-2008 - 3:26pm



I agree but DS is not completely negative. These babies

iVillage Member
Registered: 06-17-2007
Fri, 04-18-2008 - 3:28pm

"I have never seen any in these places. Can you post some links to these from other studies?"

"Again, I've never seen any of these in the offices that I've been to."

Now I see the confusion. In fact, flyers like this (and I mentioned this too) are pretty common. All of the bulletin boards in the patient rooms in my doctor's offices have pamphlets and advertisements for studies related to the doctor's specialty. In my OB's office, you see ads for studies on women who have/have had gestational diabetes or pre-eclampsia. In my rheumatologist's office, there are flyers for studies on people who have Rheumatoid Arthritis.

Outside the doctor's office? They're everywhere- television, radio, internet. I remember hearing one on the radio about an anxiety disorder (I remember it because the advertisement was so long and they kept playing it over and over). From my years on the academic circuit, I've found that colleges and universities are popular places to advertise studies. I think it's because most of them pay a small amount for providing the service. Here's a clipping from today's classifieds of the college newspaper of my alma mater, for example:

"UCSD BRAIN RESEARCH STUDY. Looking for: healthy MALE volunteers, ages 18-50 years, no major medical problems, no mental health problems, no alcohol or drug problems. Study drug and brain imaging using simple computer tasks is involved. Receive or get up to $700.Call: HOURIK 858-729-4946"

The point is that there were ample opportunities for researchers to get study participants who had had an abortion after a prenatal DS diagnosis without violating HIPAA in any way. They chose not to.




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iVillage Member
Registered: 06-17-2007
Fri, 04-18-2008 - 3:35pm

"I agree but DS is not completely negative. These babies can and do grow up to lead productive lives."

No one here has argued that DS is completely negative. What you were asked is why anyone would *prefer* a child with DS *over* a healthy child (e.g. why would I, when I give birth, say, "Gee, I wish this child was born with DS").

"There are many genetic diseases that cause babies to be unhealthy(cleft lip, club foot, sickle cell...) but they are not routinely aborted."

Who here is arguing that they should be aborted? I have only argued that they are to an extreme majority, and as such, the women who have those abortions should have been consulted on what could be done to help them feel more informed about their decision. If the point of the study was to find out how to make women see DS as a less-negative condition, why not ask the women who found it to be so negative they decided to abort?




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iVillage Member
Registered: 04-10-2003
Fri, 04-18-2008 - 3:37pm

<>

At that time, they were conducting a study on 1st trimester miscarriages and were examining the fetal remains of ALL of the 1st trimester D&Cs coming through their hospital. (This is what they told me during the initial phone call) The study specifically was looking for a link between 1st trimester miscarriages and trisomy 16. In all of the cases where the fetuses that were found to have T16, the woman was contacted and asked to join the study for her and her partner's DNA.

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iVillage Member
Registered: 04-10-2003
Fri, 04-18-2008 - 3:41pm

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I agree. And a balanced view should be given to women who are given T21 diagnoses.

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Perhaps some of them are not as vigorously screened?

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iVillage Member
Registered: 01-29-2004
Fri, 04-18-2008 - 3:48pm



I don't think that most people would prefer to have a child with a disease (although I did read an article about some that do). My opinion is that I wouldn't abort for

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