BUFFLIECE thank you for sharing ... and I wish you and your family a very healthy and happy future.
Fitness Minutes: (36,342)
2,545 8/31/13 7:29 P
I'm so sorry about your son and happy for you about your twins! I'm sorry, I'm not familiar with the abbreviation PGD but assume it's about looking at the genes to insure a healthy baby?
Yours is the type of situation where I think gene therapy would be so great. As his parents you could have authorized the treatment and saved his life. Not as in improving our species but as in improving the quality of life for your child. I think it would be a wonderful gift.
I have a balanced translocation of chromosomes. Had a son with an unbalanced translocation, a Trisomy, like Downs... he died after living only in hospitals at two months old. Later, we had twins after IVF with PGD. For us, IVF was not for a fertility issue but the only way to use the technology to see if our childrens chromosomes were balanced.
Maybe this cure being studied could have save our first son and save millions of people like him. I agree, no one should ever try to play God. But people should not fear technology either. Instead of thinking of the effect on the world, think about what a difference it would make for just one family.
Fitness Minutes: (36,342)
2,545 8/31/13 6:32 P
An interesting article, most of which I have read in one form or another.
This may sound strange, but cases like those listed actually give me hope for the human race. If you think about it, even in the early 1900's the people involved knew that what they proposed and what they did would never be acceptable to the masses. When they were exposed, they received public condemnation. We refer to these people as Monsters!
They were able to do harm because of a lack of scrutiny, a lack of publicity, a lack of public outcry. As we become a more open world (due to the Internet, travel, etc) it's harder to hide the abuses. And easier to condemn those who would do harm to others.
If we were to gather 100 people and ask them if any one race was superior to all others, everyone would say no. If we provided them with a secret ballot, I think a number, hopefully a small number, would say yes. I also think that a small number would never admit to having that belief even as they fervently believe.
When I look at the improvements in rules for experiments, gaining treatment consents etc I feel that we have come a long ways. Do we still need to improve? Yes! And maybe we will.
Humans almost always find some way to abuse they power they have, and then find some brilliant way to justify that abuse.
I would like to see some element of choice plugged into this dream of yours. Let's say someone with Down Syndrome could choose to have a genetic therapy of some sort that would make them "normal." Then I could see entertaining the notion.
The danger comes from some external entity making choices for individuals, without any sort of consultation.
The Eugenics push here in the States often used forced sterilization on people in mental institutions as well as minorities. The women who were sterilized would not be told. They were not asked if they wanted their tubes tied. This was done to prevent future generations from "suffering."
There has to be respect for the individual's dignity and ability to choose.
In my lifetime medical science has found a cure for thousands of diseases. I don't see a problem in looking for ways to prevent a lifetime of blindness, deafness, and other illnesses.
Medical technology is improving every day. My neighbor is a physician who works with an expert in the field of alternative medicine. They can detect illnesses at the cellular level. Who would have thought that was possible 50 years ago.
Fitness Minutes: (36,342)
2,545 8/31/13 4:25 P
Again, Lili, you raise an interesting moral and ethical question. How far is too far? How much is too much?
Let's assume that we have become a moral and empathetic race who would not miss use this power. (Hey, I can dream!) Let's assume that we would trust that the scientists have figured out how to safely make a change that would not cause harm.
Then, would it be the humane thing to prevent CF? Down's? Genetic kidney disease? Genetic cancers?
I think so many of our concerns about genetic testing and intervention come from a serious lack of moral and ethical guidance. Science has seriously out paced our moral dialogues! We all know that there are people who would miss use this technology. The news is filled with examples of people who will kill for any and all reasons and in as many ways as possible. Including bombing and gassing their own people. So your concerns are quite reasonable. And we don't have a very good track record.
8/31/13 4:21 P
"Using genetics to grow a "Master Race" would be morally wrong. But is it evil to try and prevent suffering in any group?"
Hitler truly believed, especially in regards to the mentally ill and individuals with disorders like Down Syndrome, that they were suffering, and euthanizing them was an act of mercy. This becomes apparent when you view the propaganda of the time. Those individuals were being released from their suffering. (I should add that he was totally wrong, and a complete monster for thinking so.)
The danger is viewing other humans as being "less" or "defective." My grandmother would say, all people are exactly the way God intended them to be. I say, there is no way we can know for sure what effect removing a certain compliment of genetic "disorders" from our gene pool will have on the population at large.
There are many people right now that hope that the gene for homosexuality can be located, because they want the ability to abort any fetus they conceive that carries that gene. They desire this because they believe that homosexuals are "defective." That's the path we are wandering down if we pursue cures to disorders like Down Syndrome. Who decides what is a disorder? Where do we stop?
Edited by: LILLIPUTIANNA at: 8/31/2013 (16:21)
Fitness Minutes: (36,342)
2,545 8/31/13 4:15 P
The responses are quite interesting!
Lili, yours is the first response that I have read (even on the original posts) that suggests that it would be evil to try and prevent a genetic disorder. Quite a thought provoking response. Thank you.
Of course, it would be evil to kill based on a genetic trait, religion or other reason as Hitler did. Using genetics to grow a "Master Race" would be morally wrong. But is it evil to try and prevent suffering in any group?
Medically, we already change what would be pre determined outcomes such as providing dialysis to renal failure patients, transplants to organ failure patients, bypasses to heart patients. All groups that would suffer and die if we did not intervene. Would supplying a genetic factor or turning off a gene be that much different?
Is it wrong to want to prevent Cystic Fibrosis etc by changing a gene versus by aborting all fetuses with the defective gens and sterilizing the parents/carriers?
8/31/13 4:08 P
There is no "cure."
Down Syndrome is also known as Trisomy 21. It is called this because the 21st pair of chromosomes is actually a trio. Instead of two chromosomes, they have three. The only way to "cure" the individual would be to either remove that third chromosome (which would have to happen before or at conception), or by somehow blocking the effects of the third chromosome.
Now, how are you going to pick which chromosome to block?
What profound and fundamental difference to the genetic content of that individual's cells will you be making if you pick one chromosome over another?
After you are done "curing" the Down Syndrome folks, who will be next? People who are hearing impaired? People who are blind? People with mental illnesses?
Who gets to decide which forms of human life are best? When will we stop correcting "mistakes" in our genetic code?
Again, history does not smile on people who do these sorts of things.
great question...(and you did not hijack a thread)
I think group 2 is crazy...because we have enough suffering in the world and enough people who suffer hardships through accidents, illness later in life, and wars...that people have enough examples to learn empathy & compassion from. It's like suggesting that we need extreme poverty to appreciate what we have...what we need is enlightenment that will focus our attention to curing the problems which create the sufferings.
Down Syndrome people are a gift to us ... like anyone else. But to think of a possible cure that might help them and their families would be a blessing. ......... There are a lot of diseases and illness that have been cured because someone looked for a solution. Do we let congenital defects go untreated because that is nature's way? Things like encephalitis were once a death sentence. Siamese twins have made amazing news items that would astound people 50 years ago. With the technology we have today, and what we will discover tomorrow, I am sure the future will continue improving on medical research. Something as simple as Lasix surgery on the eye, was not even considered when I started wearing glasses at 7 years old. And there is always patient # 1. Stem cell research; if it's your loved one who needs it, you might want it.
Edited by: SHERYLDS at: 8/31/2013 (16:14)
8/31/13 3:31 P
I am against all proposed "fixes" to the human genome. The term for what you are describing is called "Eugenics." It is a concept which originated here in the United States during the 19th Century (see the forced sterilizations in our mental health institutions that continued until the 1970s), and was later picked up by the Germans in the early 20th Century. You may have heard of the Nazis? They also tried to "eliminate" people with Down Syndrome. Today, in Germany, there are no elderly people with Down Syndrome.
Often things that we view as being disorders or diseases are really adaptations to our environment. For example Tay-Sachs disease is a horrifyingly tragic genetic disorder. However, the presence of that gene in our population, gave many of our ancestors the ability to resist Tuberculosis. Also, Sickle Cell Anemia is a disorder, that when inherited from both parents, can cause serious health issues and death, but when only half of your cells are "sickled" it can give immunity to Malaria.
Playing with the human genome leads to unintended consequences and a serious lack of empathy (see the Nazis above). Don't ever try to "improve" humanity. That path leads to dark places in our history.
Fitness Minutes: (88,278)
10,796 8/31/13 2:32 P
I think modern science and medicine is a good thing generally. I have no children, so cannot say for sure, but suspect my decision would be based upon how long the actual procedure/treatment had been in effect. I would probably be wary of something totally new.
As for somebody's question about how else would we teach our children empathy and compassion, really? There are TONS of ways for that in this world as our society is riddled with disease and cancer, homelessness, poverty, and so many other difficult parts of life. So that one thing, in and of itself, feels a bit ridiculous to me.
With that said, I've been exposed to some totally delightful Downs Syndrome kids and they are lovable, affectionate, happy and overall, just awesome. That by no means, however, means I would want any kid to suffer through condition-related issues that could be reversed easily.
So to me, it's not about anything other than being able to relieve people/kids of severe medical problems that make their lives difficult.
Fitness Minutes: (36,342)
2,545 8/31/13 1:33 P
I didn't want to hijack the earlier genetic testing thread!
I read an interesting article about a scientist who is working on a genetic cure for Down Syndrome. She has found a way (in the lab) to nullify some of the effects of Down Syndrome. If given in utero, the person would be cured, if given later in life it could reverse many of the physical and mental problems related to Down Syndrome.
The discussion that followed fell into two categories. Group 1 was the "How wonderful" group. No more retardation, heart problems, early death.
Group 2 was the " Humanity would be worse for the lack of children with Down Syndrome". How else will we teach our children empathy and compassion?
Having recently cared for an 'elderly" Down Syndrome man with severe medical problems related to Down Syndrome, my thought is that this treatment would be a wonderful thing!
What do you think? Would you have this type of treatment for you child?
SparkPeople, SparkCoach, SparkPages, SparkPoints, SparkDiet, SparkAmerica, SparkRecipes, DailySpark, and other marks are trademarks of SparkPeople, Inc. All Rights Reserved. No portion of this website can be used without the permission of SparkPeople or its authorized affiliates.
SPARKPEOPLE is a registered trademark of SparkPeople, Inc. in the United States, European Union, Canada, and Australia. All rights reserved.