Thursday, October 16, 2008

Who decides?


Down syndrome, Down's syndrome, or trisomy 21 is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. Down syndrome is associated with some impairment of cognitive ability and physical growth as well as facial appearance. Down syndrome can be identified during pregnancy or at birth.

Individuals with Down syndrome tend to have a lower than average cognitive ability, often ranging from mild to moderate developmental disabilities. A small number have severe to profound mental disability. The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although these statistics are heavily influenced by the age of the mother.

Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.

Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improve quality of life. (from Wikipedia.org)

Amniocentesis is a procedure that requires a withdrawal of a sample of amniotic fluid (fluid contains surface cells from the fetus) in the period of 16 – 30 weeks of gestation.

Chorionic villus sampling is a procedure whereby a sample of the fetal tissue partial buried in the wall of the uterus is removed. This occurs in the period 8 – 10 weeks into the pregnancy. It secures a tiny sample of cells that are actively dividing and can be analyzed quickly.

A karotype a an enlarged photograph showing the homologous chromosomes (side by side) which allows for analysis of genetic disorders such as an extra 21st chromosome I Down’s syndrome. (from Biology for the Ib Diploma by Clegg pgs 92 and 98, 2007).

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Consider the following::

1. Due to the low incidence of Down syndrome, a vast majority of early screen positives are false. Since false positives typically prompt an amniocentesis to confirm the result, and the amniocentesis carries a small risk of inducing miscarriage, there is a slight risk of miscarrying a healthy fetus.

2. A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated.

3. A 1998 study of Finnish doctors found that "Only very few, pediatricians somewhat more often, thought that Down's syndrome is not a good enough reason for pregnancy termination, but more (15-21%) thought that current prenatal screenings in general are (partly) based on eugenic thinking.”

4. Some members of the disability rights movement "believe that public support for prenatal diagnosis and abortion based on disability contravenes the movement's basic philosophy and goals."

5. The additional support needs of people with Down syndrome can still pose a challenge to parents and families. Although living with family is preferable to institutionalization, people with Down syndrome often encounter patronizing attitudes and discrimination in the wider community.

(from Wikipedia.org)

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Your assignment is to respond to this prompt in an 11 sentence paragraph format. Publish your response as a comment to this post.

“Should genetic testing and intervention be required for women who are at-risk for certain genetic disorders?

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Questions? Ask in class or email me at doug@dougabshire.com. This assignment is due by Monday 10.20. Thanks, Mr.A

13 comments:

Anonymous said...

Should genetic testing and intervention be required for women who are at-risk for certain genetic disorders??

I think Testing on women who are at risk should be tested. I think it would be good to test women becuase kids who are born with a defect, are already at a fault in life. But at the same time, i believe women should have the choice wether or not they want to keep thier kids, if they have a form of disablity.If a couple decides to raise that kid, it is pourely thier decision. but i think testing should be conducted overall to all pregnancies, so people know, and if in fact they do not want to have that kid, they can choose to abort it before the child is born..So basically testing should be done, but up to the people if they keep it..

-Ricky G.

Grace.Leigh said...

Genetic testing and intervention should be required for women who are at-risk for certain genetic disorders for many reasons.

Devin said...

Testing and intervention should be available and encouraged, but not required for women who are at-risk for certain genetic diseases. To impose the restriction and requirement of testing, even if it is for the supposed benefit of the patient is unethical and a breach of civil rights. The idea of restriction is unethical to impose because "false positives typically prompt an amniocentesis to confirm the result, and the amniocentesis carries a small risk of inducing miscarriage, there is a slight risk of miscarrying a healthy fetus", meaning that imposing these tests forces a woman and future mother to subject to a procedure that could potentially cause a miscarriage, killing her child, defect or not. Requiring the procedure also breaches civil rights because it takes away the mother's freedom to choose what action to take once she is given the information regarding her genetic condition. Although the tests and procedures should not be required, they should still be available to the patients who wish to take advantage of them. When patients are informed of the condition of their unborn child, they should also be informed of the procedures available to confirm the information and to aid in the development of their child's future. To not inform these potential parents of the possible ailments of the condition (such as "a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions", among other things) is irresponsible and equally unethical for the doctor. These interventions and procedures, however, should be highly encouraged. The health concerns associated with Down syndrome are too dibilatating to be left unheard. Considering the benefits of early childhood intervention in "correcting" Down syndrome, the potential parents should absolutely be informed to make an educated decision in whether or not to proceed. Women who are at-risk for certain genetic diseases should be informed and encouraged to undergo tests and procedures to aid with children with Down syndrome, but it should not be required of them.

Todd said...

Well done entry, Devin. Nicely thought out and eloquently put.

There are a multitude of ethical and moral concerns around genetic testing. First, it could then become possible for insurance companies to deny claims and even coverage based on the premise of "pre-existing condition." For example, if it is shown in the womb that a female fetus has a genetic predisposition towards breast cancer, then theoretically an insurance company could say that the conditions for cancer existed prior to coverage, thus negating any claims for payments for treatment.

Secondly, the science of eugenics is a slippery slope indeed. As the post is titled "Who decides?" The science of "selective breeding" takes on some rather chilling implications when advances in genetics and genetic engineering are taken into account. The potential for genetically engineered "perfect" children is real, and was (and is) the goal of eugenicists.

That being said I'm not sure that genetic testing should be actively encouraged for anyone for any reason. Granted, while there are undoubtedly some benefits to testing, those are dubious at best, and the question becomes one of evolution as well as ethics. As humans, we are who and what we are as a result of generations of mutations and developments. How are we to know which mutations may or may not prove useful in our future as a species?

A final question: genetic testing and "intervention" implies that a child can be "defective" and thus unworthy of living. Is that a mindset in which we wish to live?

Maruahhh said...

Testing and intervention should be required for women who are at risk for having genetic disorders. But I also think the woman should have the option, so yes it should be encouraged by the physician but at the end the mother should have the last word. If she knows she may have a problem and wants to have some interventions she should have the option to do so. Down syndrome would put a child through a lot of inconveniences and it would give the parents more responsibilities so I think it is essential for the parents to know if they are at risk at producing a child who may be born with the Down syndrome. Since 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated meaning the pregnancy was interrupted by this procedure it gives people a reason to not want this done. So is it worth the risk? The parents decide but they have to keep in mind the consequences that the procedures may bring and they should also keep in mind that a child with Down syndrome will need much more attention than a normal child.

Anonymous said...

Genetic testing and intervention should not be required for women who are at risk for certain genetic disorders. Testing and intervention should not be forced upon the mother. It should be the choice of the mother. It is her right to either know or not know about the possible conditions of her unborn child. Genetic testing does have its drawbacks. Amniocentesis is a procedure where a needle is used to withdraw a small sample of amniotic fluid. It has a small risk of causing a miscarriage of a healthy child which means that a woman might lose her unborn child because of genetic testing. Women should be warned about the possibility of having a child with certain disorders such as Down's syndrome. A child with Down's syndrome requires more attention than a child without Down's syndrome. A mother can then choose whether or not termination of her pregnancy is necessary. Genetic testing and intervention should be recommended to women who are at risk for certain genetic disorders, not required.

aBmer said...

Testing for Down Syndrome should be the women choice. If she as at risk for causing a genetic disease then she should be informed but should not be forced to be tested. If the mother was forced to be tested and the unborn child was found to have a genetic disease such as Down Syndrome she might want to abort the pregnancy. And not even give the chance that the test could be wrong. I believe it is better to not know what could happen to the unborn child but not know for sure. By not knowing the absolute out come of the unborn child there would be less abortions possibly. If the child turns out to have Down Syndrome or another genetic disease is discovered after the birth and the parents are aware that there is the possibility and already know the child will require more attention. the parents can decide if they are keeping the child or giving it up for adoption. The choice of being tested for an unborn child having a genetic disease should not be forced. It should be a choice.

Seth Shreve said...

I believe that genetic testing on unborn fetuses shouldn't be forced upon anyone for many reasons. Most importantly it opens the door to force women to get their babies tested for a whole range of other things. If it were forced to test for genetic defects, maybe they would discover something else they didn't like and have an abortion. The question is, is that fair to the unborn baby? What are the rights of the unborn fetus, i believe that a women has the right to choose whether she wants to have an abortion, but i also believe that her choice shouldn't be based upon a test that is compulsory for all women with risk factors for a genetic disease. It should be based upon her own ethics and her own morality. I also believe that if a women has a test for downs syndrome she shouldn't immediatly choose abortion. The women has the right to choose but i don't think that a child should be condemned just for its genetics. These reasons are why i don't support the forced testing of women with risk factors for genetic defects. Therefore a women has the right to choose whether she wants to be tested and whether she wants to abort the child but she should be counseled about what she can do to live with this baby instead of just turning to abortion as the best solution.

Anonymous said...

MARYANN :)
Genetic testing and intervention should not be requried for women who are at risk for certin genetic disorders.One major reason it should not be inforced is because by tskeing an amniocentesis test it carries a small risk of a miscarige.These means that even if the fetus did not have a genetic disorder then it still has a small chance of dying due to testing.However genetic testing should be provided for those who feel there is a high risk of genetic disorders.If it is found that there is a disorder then the parents should be able to decide what is to be done about it.Parents should be informed that abortion is not the solution for dealing with a geneticly disorderd fetus there are other opptions and there is always a posibiltiy that the test could be wrong. The termination of the fetus would be inhumane it is as if they were terminating the pregnancy because the parents wanted a boy and found out they were having a girl so they decide to abort. Just because its not what they wanted it doesnt mean they should abort.Of course it will be dificult to raise a child with a genetic disorder such as down syndrom, but people should realize that life is dificult and it is lifes challenges that make a person who they are.Then again if a person is incapeable of the responsibility of having a child with disorders then it is up to them wether they wish to keep the pregnancy going or to get an abortion. In the end what it all comes down to is that genetic testing and intervention should be a choice not a requirement!

jacqueline said...

I believe that genetic testing and intervention should be a choice for women who are at-risk for certain genetic disorders. I think that the testing and intervention should be seen as a possible resource for those women who believe that they might be at risk for giving birth to a child with a genetic disease. There are many women that might know that they have a gene that might enable a higher risk of having a baby with a genetic disorder. So, they may want to make sure that her baby will be healthy or will have a disorder of some type. Other women may want to check and make sure that they have a possible risk for a miscarriage . That way they will take better care of themselves.
Secondly, if a woman that is older than 35 years and becomes pregnant, she shouldn't be required to be tested and intervened if she absolutely reclines to that option. Many women at that age are in incredible risks to give birth to a baby with a genetic disorder. So, she should be encouraged to be tested but not be obligated. Women should have the right to decide wether or not they want to know if her child will be born with a disorder just as well as they are given the choice to pick if they want to keep they baby or simply get rid of it through an abortion. All in all, this topic of either requiring or making testing and intervention an obligation is very controversial, since every person has his or her opinion about whether it is unethical or not. Still, I believe that women should not be forced to be tested and intervened in order to see if they will give birth to a baby with a genetic disorder.

The Greatest said...

I think a woman's choice to get genetic testing tha tmay or may not result in an abortion is sacred. The fetus growing in a womb is a part of the woman's body. There is no sign of intellegent life in the early stages of pregnancy. This makes the fetus a part of the woman's body that she can choose to do what she wants with. The woman may also take into account the life of the child after birth. If she thinks that a baby born with this disease will not be happy or beneficial to society than it is a justified decision. Raising a disabled child is hard work. This may be too much for some individuals. The fact that someone can recognize this and understand it is very responsible. Not utilizing this technology because of the beliefs of some individuals is in fact irresponsible. The ethics of not allowing the technology to do what it was made for is in no way morally right. These options should be availabe to any woman deciding on giving the gift of life, because after all it is her gift to give.

Anonymous said...

Matt Hagen


Genetic testing involving the fetus of a woman to test for downs syndrome is solely up to the woman holding that child, but I believe that it is not necessary to test for this, but if wanted, it is there for people who want it. Although, I don't believe that it is humane to take a babies life just because it has different traits that everyone else has. If every child had downs syndrome, and there was a few "normal" children born, it would be equally cruel to abort that particular fetus. A child born with downs syndrome shouldn't be looked at different, but should be taken in with equality and respect of any other human child.

But with the respect of the parents, you have to think of how much stress the parents will be in with caring for a mentally challenged child.

So all in all I am neutral to to fact of aborting a fetus, but more so against it.

doug.abshire said...

As many of you know, my youngest son has severe autism. At the time we found out we were living in Africa. We moved back to the US and he lived with us until he as about 20. Paul was violent towards both of his parents and physically hurt us on a daily basis. We loved him even during all of the bad times as well as the good times. So was it worth it to have Paul be born and not "terminated"? Should his mother or other pregnant women be tested and interventions be used? Would we have done this if we knew what would our lives for the next few years? I don't know. I do believe that "nothing happens by accident" so perhaps Paul was intended to my major life lesson. I am grateful that he is now in a group home at the Wheat Ridge Regional Center where he receives support in all areas of his life. His mother and I visit him on a weekly basis and this allows us to appreciate him for the person he is and will be. We are reassured that as we get older he will continue to receive the care needed to provide the quality of life with dignity that he richly deserves! Mr. A