Genetic makeup and the decision to bear kids

[D&T]

This thought never occurred to me until having several friends diagnosed with cancer, and one specific friend of mine have undergone genetic testings. She has kids, and I am so amazed at her ability to stay positive and her strength to battle this out. She says that there is a 50% chance that her kids carry this cancer gene. She has a four year little girl, and dr. says they can't really do anything until she is the age of 18 and then medications can be prescribed if she infact has the gene. My question is, if you know that you have some sort of genetic cancerous or any type of consequential genetic defect, would you bear kids or want to bring in life to this world knowing that you could potentially pass down a deadly gene to them? DH and I had a brief discussion and he says that life is so precious, that those who know or have genetic defect of some sort live their life to the fullest, but part of me I'm not sure if I could bring kids into this world if I knew, I don't want a snowball effect. I don't know what are your thoughts?

 

[TravelingGal]

This was a thread on this exact topic a couple of weeks ago with lots of interesting responses if you''d like to take a look...

https://www.pricescope.com/community/threads/genetic-diseases-would-you-risk-children.113619/

 

[D&T]

ahhh. Thanks TGal... must have missed it..

 

[Italiahaircolor]

For me, the decision would be entirely based on exactly what the genetic disease is/would be.

Cancer? Well...I''m hopeful. I think that the strides the medical community is making makes the possibility of a cure very real...and hopefully within my lifetime--if not, then hopefully in the lifetime of my children we will reach this. So no, the chance that my child may have cancer wouldn''t sway me away from having biological children.

An incurable disease or disability? Yes. It may sound selfish...but that''s how I feel. If I were to know going into it that my child would lead a short, pain filled, complicated life...I''d love the baby enough to spare him or her from that.

 

[purrfectpear]

Cancer isn''t fatal if treated, so I would probably not let that stop me from having children.

A disease which is 100% fatal, or one which requires a transplant, or was extremely disabling, I would not.

 

[swimmer]

I''m with PP. There are conditions that make life unsustainable and painfully kill infants on one hand and then there are heart disease and cancer on the other.
Both are lethal (ultimately), but the first is frightening and the second is just life.

The thing is, humans die. The are no guarantees. If you choose not to reproduce because of your genetic material, your adopted child could have still have a terrible condition. These things happen. Beyond that, cancer or heart disease will kill most of us. Just speaking statistically. Certain behaviors will help survival in the long term like a healthy diet and not smoking or working in a coal mine but ultimately cancer is unregulated cell growth and we are all dependent upon regular cellular growth. My hope is that society moves away from prolonging death and more into an acceptance that death is an inevitable component of life.

Until 200 years ago, humans could expect to live 30 years. Hearts, teeth, and the ability to continuously regenerate ourselves on a cellular level from the inside out, only last so long.

 

[zhuzhu]

Actually cancer is treatable, but eventually and often it is fatal. Depending on the cancer type, the treatment can be very painful and disabling. Of all the diseases that we can eventually die from, I hope cancer is not my thing.

As for D&T''s question, if I were a person who wants children, they type of disease the baby is at risk for will play a big part in my deciding for having or not having kids. If it is a polygentic disease with a wide spectrum of phenotype severity, I might take a chance. However if it is an autosomal dominant disease, I will think twice about getting pregnant, or to use genetic testing to evaluate the feasibility to carry him/her to term.

 

[DivaDiamond007]

Date: 5/16/2009 12:34:38 PM
Author: swimmer
I''m with PP. There are conditions that make life unsustainable and painfully kill infants on one hand and then there are heart disease and cancer on the other.
Both are lethal (ultimately), but the first is frightening and the second is just life.

The thing is, humans die. The are no guarantees. If you choose not to reproduce because of your genetic material, your adopted child could have still have a terrible condition. These things happen. Beyond that, cancer or heart disease will kill most of us. Just speaking statistically. Certain behaviors will help survival in the long term like a healthy diet and not smoking or working in a coal mine but ultimately cancer is unregulated cell growth and we are all dependent upon regular cellular growth. My hope is that society moves away from prolonging death and more into an acceptance that death is an inevitable component of life.

Until 200 years ago, humans could expect to live 30 years. Hearts, teeth, and the ability to continuously regenerate ourselves on a cellular level from the inside out, only last so long.

The highlighted part describes how I feel.

There are some diseases that run in my family and also DH''s that could be considered genetic (diabetes, cancer), however, there are no guarantees. I would feel differently if I knew that I would have a child with debilitating (sp?) disease that had no treatment or cure.

There are only two inevitable things in life: taxes and death.

 

[D&T]

Date: 5/16/2009 2:17:17 PM
Author: zhuzhu
Actually cancer is treatable, but eventually and often it is fatal. Depending on the cancer type, the treatment can be very painful and disabling. Of all the diseases that we can eventually die from, I hope cancer is not my thing.

As for D&T''s question, if I were a person who wants children, they type of disease the baby is at risk for will play a big part in my deciding for having or not having kids. If it is a polygentic disease with a wide spectrum of phenotype severity, I might take a chance. However if it is an autosomal dominant disease, I will think twice about getting pregnant, or to use genetic testing to evaluate the feasibility to carry him/her to term.

zhuzhu- can you elaborate on this, i''m so curious, as I''m not in the medical or science field and it interests me and they are such big word for me to grasp really

... And definitely agree with others, science has come a long way to help reduce the severity and prolong life in certain conditions.

 

[D&T]

Date: 5/16/2009 3:22:56 PM
Author: DivaDiamond007


There are only two inevitable things in life: taxes and death.

uggg...seriously...

 

[choyoyo]

D&T,

I''m not Zhuzhu, but I can help answer. A polygenetic disease is a disease outcome that is controlled by many different genes- and the interaction of all those genes can give you a range of disease severity- from minimal to debilitating.

An autosomal dominant disease is controlled only by one gene- if 1 parent has the defective gene, but the other parent has a normal gene, the offspring will definitely have the disease no matter what, and typically it is severe.

 

[D&T]

Date: 5/16/2009 7:22:04 PM
Author: choyoyo
D&T,

I''m not Zhuzhu, but I can help answer. A polygenetic disease is a disease outcome that is controlled by many different genes- and the interaction of all those genes can give you a range of disease severity- from minimal to debilitating.

An autosomal dominant disease is controlled only by one gene- if 1 parent has the defective gene, but the other parent has a normal gene, the offspring will definitely have the disease no matter what, and typically it is severe.

Thanks Choyoyo! do you know of any autosomal cancer disease? if any/many? sorry if I sound a bit silly or ignorant on the subject matter.

 

[MakingTheGrade]

I think the most well known cancer gene I've heard/learned of thus far are the BRCA genes that have been shown in studies to increase the chance of breast cancer upwards of 80%. But even then, every individual is different, and it's not exactly an Autosomal dominant kind of transmission where if you have this gene mutation you are bound to have it (Huntington's for example is a classic Autosomal dominant disorder, and if you have the gene disorder you will die of Huntington's). And cancer is treatable, and some women who have the BRCA mutation choose to have their breasts and ovaries removed while they are relatively young, which can drastically reduce the risks of cancer later on. Granted, that's a very hard thing to do, but I'm just trying to say that there are things you can do to modify your cancer risk if you're aware of your genetic risks. You aren't entirely at the mercy of your genes like in some other disorders.

Most of the very severely painful and fatal genetic disorders can be diagnosed via genetic screening early on in fertilization (possibly even at the level of the egg/sperm, although I'm not sure). Personally, if my fiance and I had a relatively large chance of having a Tay Sachs child (there is no cure, it's extremely painful, and almost all kids will die by 5), I would either adopt or genetically screen embryos because I don't think I could emotionally survive that kind of trauma.

 

[D&T]

Date: 5/16/2009 8:35:00 PM
Author: MakingTheGrade
I think the most well known cancer gene I''ve heard/learned of thus far are the BRCA genes that have been shown in studies to increase the chance of breast cancer upwards of 80%. But even then, every individual is different, and it''s not exactly an Autosomal dominant kind of transmission where if you have this gene mutation you are bound to have it (Huntington''s for example is a classic Autosomal dominant disorder, and if you have the gene disorder you will die of Huntington''s). And cancer is treatable, and some women who have the BRCA mutation choose to have their breasts and ovaries removed while they are relatively young, which can drastically reduce the risks of cancer later on. Granted, that''s a very hard thing to do, but I''m just trying to say that there are things you can do to modify your cancer risk if you''re aware of your genetic risks. You aren''t entirely at the mercy of your genes like in some other disorders.

Most of the very severely painful and fatal genetic disorders can be diagnosed via genetic screening early on in fertilization (possibly even at the level of the egg/sperm, although I''m not sure). Personally, if my fiance and I had a relatively large chance of having a Tay Sachs child (there is no cure, it''s extremely painful, and almost all kids will die by 5), I would either adopt or genetically screen embryos because I don''t think I could emotionally survive that kind of trauma.

oooh that would be so sad

 

[Lilac]

I spoke to my doctor about something like this a few months before I got married actually. My parents were pressuring me and fiance (at the time) to get genetic testing done to screen us to see if we were both carriers for certain genetic diseases. However, I knew even if we were both carriers, it wouldn''t change the fact that I wanted to marry him and we would want children, so I asked my doctor if we could still conceive if we both WERE in fact carriers for these diseases.

She said it''s obviously much more difficult, but yes, they could specifically choose embryos to implant that didn''t have the diseases or if it were something like Tay-Sachs, they could wait until I was pregnant and do an amniocentesis to see if the baby had the disease and if it did they could terminate the pregnancy and DH and I could try to get pregnant again and hope for the best (obviously I would prefer option 1 because I don''t think I could handle option 2).

DH and I decided not to do genetic testing until after the wedding because I didn''t really want to know if we were both carriers for anything before the wedding - I would want to get married anyway and didn''t want to have to deal with the added worry and stress. I recently found out that several members of my family are carriers for a genetic disorder so now that it''s been a couple months since the wedding, we decided this past week to start the testing process and a few days ago DH got the genetic testing done. It takes up to 3 weeks to get the results, and if he is a carrier for anything, I will get tested also and then we will discuss our options with a doctor if we are both carriers for any of the diseases.

So after this long story I haven''t actually answered your question.. So to answer, if we both were told we were carriers for a disease, I would only bring a child into this world knowing it did not have the disease (I would talk to my doctor about it and probably would choose in-vitro/selecting specific non-diseased embryos or something like that). However, if it were cancer, I don''t know. Do they test for that and can they select embryos without that gene? I haven''t heard that much about it so I don''t know if I could bring myself to have a child who had a very high chance of getting cancer.

It''s a tough question. The only thing I really know right now is I''m going to do this genetic testing to try and prepare myself with all the information just in case DH and I ARE carriers for something.

 

[D&T]

Date: 5/16/2009 9:27:17 PM
Author: Lilac
I spoke to my doctor about something like this a few months before I got married actually. My parents were pressuring me and fiance (at the time) to get genetic testing done to screen us to see if we were both carriers for certain genetic diseases. However, I knew even if we were both carriers, it wouldn''t change the fact that I wanted to marry him and we would want children, so I asked my doctor if we could still conceive if we both WERE in fact carriers for these diseases.

She said it''s obviously much more difficult, but yes, they could specifically choose embryos to implant that didn''t have the diseases or if it were something like Tay-Sachs, they could wait until I was pregnant and do an amniocentesis to see if the baby had the disease and if it did they could terminate the pregnancy and DH and I could try to get pregnant again and hope for the best (obviously I would prefer option 1 because I don''t think I could handle option 2).

DH and I decided not to do genetic testing until after the wedding because I didn''t really want to know if we were both carriers for anything before the wedding - I would want to get married anyway and didn''t want to have to deal with the added worry and stress. I recently found out that several members of my family are carriers for a genetic disorder so now that it''s been a couple months since the wedding, we decided this past week to start the testing process and a few days ago DH got the genetic testing done. It takes up to 3 weeks to get the results, and if he is a carrier for anything, I will get tested also and then we will discuss our options with a doctor if we are both carriers for any of the diseases.

So after this long story I haven''t actually answered your question.. So to answer, if we both were told we were carriers for a disease, I would only bring a child into this world knowing it did not have the disease (I would talk to my doctor about it and probably would choose in-vitro/selecting specific non-diseased embryos or something like that). However, if it were cancer, I don''t know. Do they test for that and can they select embryos without that gene? I haven''t heard that much about it so I don''t know if I could bring myself to have a child who had a very high chance of getting cancer.

It''s a tough question. The only thing I really know right now is I''m going to do this genetic testing to try and prepare myself with all the information just in case DH and I ARE carriers for something.

ahh, it is very tough, I do wish you luck.. I really never thought about it, and probably should have before I even had kids, my mom has a brain tumor and my aunt passed away with cancer, ugggg.... we were so very young when we got married and had kids right away,,,,,(not planned) but now, just thinking about my friends and their kids and now, my own kids uggg...

 

[MakingTheGrade]

My fiance is adopted from Korea, and he has no idea what his family history is (he himself is in perfect health so far, fingers crossed that it continues that way). It does worry me to a degree, and I''ve wondered about having us both screened for the major genetic disorders that are universally fatal.

He is asian though, which puts me a little bit more at ease since things like Tay Sachs and Huntington''s aren''t too high in our ethnic pool. Aside from thalessemias and problems with holding our alcohol, I haven''t learned much about particularly devastating genetic diseases that are highly prevalent in asian populations. Doesn''t keep me from worrying though :/

 

[somethingshiny]

I can''t answer the question personally.

I have a friend/family member who has a little boy with Werdnig Hoffman''s disease. He was diagnosed at just 6 months old with a muscular atrophy disorder that would slowly take his life. Both parents have to be a carrier and then there''s like a 25 percent chance that their offspring would have the illness. (They did not know they carried the gene until after he was diagnosed) The boy is on all sorts of machines and medication, feeding tubes, etc. He never got to walk, climb, run, etc. He has no movement at all except for a tiny bit to breathe and a bit in one hand. He can talk but because he can''t really move his facial muscles it''s hard to understand him. He is 5 years old. He is a very observant, caring, confident, funny kid. He has changed the lives of hundreds if not thousands of people. He has outlived his "expected age" by 2 years. He and his family have given hope to those who have a child with the same condition. Every day that he''s alive he brings joy to those around him, expecially his big brother. He has taught friendship, tolerance, and respect to the entire community.

Yes, it''s difficult. I can''t even begin to imagine what his parents must feel on a day to day basis. I don''t know if I could do it myself. I thought a lot about the different treatments that they chose to use. I don''t know if I could put my child on a feeding tube. I don''t know if I could watch him starve instead. I don''t know if I could pump his chest to keep his lungs clear. I don''t know if I could watch him drown instead. Every day of their lives they WORK at keeping him alive. Every time he smiles, they know it''s worth it.

I''ve talked to his mom about having more kids even though they know the risk. She says that he has brought so much love into the world and if God wanted her to have another, she would gladly bear the responsibility. She has to be the strongest woman I know. She is aware that every day is a gift. I don''t know if I could take the risk knowing that the child would never be a "child", but at the same time, I truly believe God wants that boy to be in this world and if he wanted another child with the same disability to be here, I can''t imagine a better mom.

 

[D&T]

awwwhh Shiny- your Post made me cry

... such a sweet family friend you have. It truly amazes me to hear of people like that. my prayers are with them.

 

[zhuzhu]

Shiny, I am sorry to hear the suffering of your friend''s child. They did not know they were carrier for the risk allele before, but now they do. Hopefully if they plan for the next pregnancy, the same outcome can be avoided with genetic counselor''s guidance.