I am genetically screening my future children. AMA.

I'm sorry, but to those who say that "playing god" isn't right, how the FUCK can you argue against a 97% vs 50% chance of having a healthy child?

It's a simple decision for us :)

Also since we have 8 embryos left over we will have all of our children through this ivf/pgd cycle. And most likely all of them be healthy

This is incredible, I think this should be much more mainstream. It's almost unethical to get pregnant knowing the child might inherit a disease.

Edit: decease -> disease.

I agree

I was born with Ehler-Danlos Syndrome, Blepharitis, and a body that is only misshapen enough to give me a bit of Scoliosis. I have been in constant chronic, sometimes crippling pain all my life and my vision is so bad that corrective lenses cannot be made strong enough for my eyes anymore. I cannot get lasik. I cannot look up when I am outside due to the bright sunlight.

Thank you for doing this. I am an evolutionary dead end and while I cherish the life that I have, I am incredibly grateful for what you are doing for your children by making sure that they do not suffer.

I'm sorry for your genetics. I hope they can do something for you in the future

Aren't those cute little embryos! Yes they are, just makes you want to pinch their wittle cell-y cheeks!

Nah, but seriously, congrats. And thanks for donating to stem-cell research, that's pretty awesome. Any names chosen yet?

Madison Marie will be her name. Only a few more months and we will get to meet her.

Thank you! As someone who has worked with children with all kinds of MD, this is awesome news. Yes a child can have a happy, though short and painful and possibly full of ridicule, life with this disease. Seeing the work and tears that goes into caring for this particular special need would make this decision a no-brainer for me as well. Thank you for not assuming that ANY life is better than NO life.

I couldn't of said it any better. And thank you for helping those disabled!

If you don't mind sharing, approximately how much are you paying for this process? Due to some very funky hereditary things, we are in the very beginning stages of learning about genetic screening.

total for the IVF and PGD is somewhere around 15,000-20,000 (insurance does not cover it). It was intimidating knowing the bill was for sure there, but there was no guarantee on having a healthy embryo, or child. We are overwhelmed with the number embryos. We will be able to have all of our kids through this cycle (we plan on having 3 kids total)

So, you're going to have kids who were made at the same time, but not born at the same time? If I'm right in thinking this, this has just blown my mind! Congratulations!

You are correct. Want your mind blown further? Hypothetically if I were to pass away tomorrow, she could have children "with" me years after I was gone.

If only you could have seen my reaction to that. Holy hell that's unbelievable!

They also took 1 individual sperm out of the pack and directly implanted it into the egg (google icsi) To take it even further we can freeze sperm for years. One ejaclation on average is about 20 million sperm

http://www.hfea.gov.uk/ICSI.html

how did they pick the "lucky" one out of...so many? are there any ways to select for the "best" looking one?

They look to see how fast the cells are reproducing and how the outer wall looks

Sorry if you've already answered this elsewhere, but how long are the other embryos viable?

They didn't give us an expiration date. There is a chance that when they unfreeze them that they won't get up and going again, most do however. They said freezing them for 5+ years won't be a problem. Sorry for the late response

Thanks very much for your response! It's nice to go in with even a vague idea. Good luck on your journey!

Thank you

Science, bitch! That's just cool. How are you two holding up? I'm sure it's incredibly stressful for you both.

We are doing well. She is currently 22 weeks pregnant with our healthy girl (embryo #3). When she is born in August she will be tested one more time to confirm that she is not affect with MD

Did #7 disappear?

Basically...he didn't attach to her uterus.

I'm sorry. Congratulations on Madison! I love that name!

No worries. And thank you! She will be in a very small group of PGD babies. I am just a bit nervous about her last genetic test after she is born.

What is your plan if you find out that she has MD? (Not jinxing it!)

Also this whole process is amazing. I took a developmental biology course last quarter where we learned about all of this, and now I'm seeing how it applies to someone in the real world, doing an AMA for us. Thank you.

If she does have it, then we have done all that we could

how cool it is that you can say with a straight face that "you" tinkered with your cells to produce a healthy(hopefully) child. It's like a science project.

"Look honey, We made a girl from scratch".

Haha...all couples make kids from scratch...we just had to inspect ours first.

Dumpster baby if she is?

Of course not. If she is affected with MD then she will be a carrier and we will know that we done everything within our power to try to prevent it.

Hey man, first if all, congratulations on making this important decision. As a person working on stem cell research, we As a community greatly appreciate your help by donating those eggs for research! You rock! My question is: how did you first found out about this option? What was your reaction? Did it take some convincing to you or your wife to donate the eggs that were affected?

Thanks for doing this!

We were unsure what to do after we found out she was a carrier. We even looked into adoption. We eventually found out about PGD through the Internet. Our reaction was overwhelming. I wish I knew a better word to describe it. As far as donating the affect embryos we didn't need any convincing. We want to help others and we knew they were very valuable. Her brothers are affected so it makes us feel better that we could contribute. You rock for working in the stem cell field!

i have to do this exact same thing. my wife carries marfans syndrome. 50/50 is not good enough when with a bit of money i can make it basically 100/0

I agree...best of luck to you two! Science is a wonderful thing!

At first I was like "genetically screening your kids? This guy is a nutjob" but then I read why and it makes sense. I hope things work out for you. Seems like the more responsible thing to do.

Haha...thanks! It is an involved process. I am jealous of the people that get to make babies naturally with no major risks.

If by some chance you were to ever get pregnant naturally, would you abort a child with MD?

Most likely, if it was caught early in the pregnancy and if it was a male. We are pro choice. It effects the quality of life too much

I just quickly read up on MD, I know nothing else about it, but you would abort the male because it would be affected by the disease, while a female would just be a carrier like your wife and not actually affected, is this correct information?

Correct.

I see, thanks! So when you mentioned "our children would have a 50% chance of being affected by MD" you were specifically talking about there being a 50% of it being male vs female? A follow up question being is the transmission rate of MD to male children 100%?

We had a 50% chance of our children being affected in someway. Females are carriers and can pass it to their kids like my wife (and can have heart issues because of the disease). Affected males suffer all over.

The other 50% is the males being completely free and females also being completely free and cannot pass it to their kids.

http://en.wikipedia.org/wiki/File:XlinkRecessive.jpg

Pictures always help :)

I'm also pro choice , I was just curious, I don't know anything about MD or quality of life. If this genetic testing is unsuccessful, would you continue with the embryos that you have, or try naturally?

We would continue with the other embryos we have. It is still a better chance then trying naturally.

If this hadn't been an option would you and your wife abstained from having children?

We would of done adoption. We could not live with ourselves knowing the risks before hand and still rolling the dice. We cannot thank the scientist enough! This truly is a gift from the previous generations

do you still consider adoption? I'm glad you guys got to have a baby =)

Not anymore, because we have one baby in her belly (22 weeks along) and we have 8 embryos left in the freezer. We actually might have a couple embryos left over when we are done having kids.

1. Have you ever seen the movie Gattaca? If you have, what are your feelings about it compared to what you are doing?

2. Do you think what you are doing constitutes eugenics?

3. Do you view eugenics as positive or negative?

4. If you don't think that this is eugenics, what would your definition of eugenics be?

I have not seen the moive.

Lessing the pain and suffering of the human race i think is a wonderful thing. There is/was a possibility of having Duchenne MD . People with that type of MD are usually in a wheelchair by age 7 and pass away in their teens. Beckers is less severe, thankfully

I view eugenics as a positive thing

You should watch Gattaca because it is a good movie (and somewhat relevant).

I will check it out soon

This is awesome, we are not playing "god" by just trying to ensure our childrens health and future well being!

Because it seems like embryo #3 was the strongest, do you think out of all the embyro's that one will produce the healthiest, strongest baby and future adult? Just kind of in general/life? I wouldn't be surprised if that was so, at least in terms of physical robustness.

I don't think it will. According to the embryologist it does not mean embryo #3 will be an all star athlete. It just means at that time she looked the strongest and healthiest. They said it could stop reproducing cells at anytime.

I am also a carrier for MD and I understand the fear that you're going through. We will be going through the same process in the next few years. Good luck to both!

I hope you produce a lot of embryos! You need a big number to start with. What type of MD? Please donate the affected ones to stem cell research. The embryo transfer made our eyes water!

Will your children need to go through a similar process one day when they want children too? Or by filtering it out at this stage, have you essentially removed the problem?

We will have removed the problem

Cool. I'm thinking of doing something similar later as vitiligo runs in my family.

Good luck! I hope you have a happy, healthy girl :)

Thank you. I hope they can help you with your situation too!

If you go decide to have more children... would you implant the two unknown, to let the gender be a surprise?

There's nothing wrong with knowing the gender beforehand... It's just funny that two eggs are "gender unknowns."

No. We said from the start that we would do the opposite gender of this baby. So next time we will transfer two male embryos. If those don't attach then we would try the unknowns in hope for a boy. We have plenty of unaffected females left. Of the 8 affected embryos 6 were males. We most likely at the end will have 2 girls and one boy, hopefully all healthy. :)

How is the gender of the two embryos unknown? If they are doing a genetic test for MD than finding two X chromosomes or XY would be simple (XX = female XY=Male). And not finding the XX or XY chromosome would mean major problems.

I am not sure...maybe those 2 embryos didn't decide what they were going to be?

That's not possible, the gender is set in stone as soon as the DNA is formed, it's either XX or XY, there's no in-between (assuming a normal human).

The most likely scenario I can think of is that the gender test was a dud and they didn't try again (probably because it's expensive, or didn't want to take more tissue from the embryo). Of course, this is just speculation, I'd love to know the real reason.

Yeah, they even told us there is a chance that some embryos they would not be sure if it was affected or not and the same went for the gender. The 2 unknown gender embryos will be our last resort in trying to have a male.

I think you're doing the right thing, you're contributing to stem cell research which could help people one day and you're practically ensuring a healthy child :)

Thank you..we were happy to donate them to stem cell research

wow thats crazy! Just out of blunt curiosity but are there any side affects to this?? Canyou change some of her physical traits/choose out traits you wish for her/him to have?

It is a new technology, currently there are no known side affects. We cannot change any genes. We can just choose male of female and healthy or affected). The genetic test was so complex it took about 14 weeks for the scientist to complete. The genetic test was made for US only. It will not work for anyone else in the world

Why can it only be carried out in the US? Has that something to do with the specific genes involved or is it some nasty patent?

I meant this genetic test was built custom made for me and my wife. Even if she were to have this done with anyone else there would be a completely different test made for them. (i didn't mean the United states..lol)

wow im in Canada but ive read about this stuff in biology! It truly amazes me how people can do this... did they tell you any cool facts that you would like to share ? :)

PGD is becoming more and more popular. The first PGD was done in 1990. There will be more advanced PGDs coming in the future. There are more genetic diseases they can test for then just MD. The embryos in the picture i posted are magnified about 700 times and are about 100 cells (it was just before the transfer into her uterus) The male is on the right and the female is on the left. :)

How did you find out your wife was a carrier? Was she symptomatic, or were there other males in the family?

We found out because of her brothers. They were showing signs at the age of 13. That was what raised the red flag

Did you ever have any philosophical or moral qualms about genetic screening or was it an easy decision?

It was an easy decision. A no brainer. When we found out she was a carrier we really didn't know what to do. Then we discovered PGD and we knew that was our answer. I wish i could describe that feeling. :D

Did you ask for information on any other traits the embryos would have?

the only information gained through this process is the gender, effected with MD and to check the number of chromosomes (to help avoid a miscarriage)

how could they actually have "gender undetermined" ones? =P I thought that'd be pretty obvious?

I thought so too...

I love the movie Gattica. Thanks for bringing it one step closer to reality!

I will have to check it out

How much does all this cost? Is it feasible at this moment of time to screen for physical fitness, good looks, and intelligence or not yet?

We havnt added up all the bills but I would guess around 15-20k. I don't think they can screen for those qualities you listed though. I haven't looked into that either. More advanced PGDs are coming though, that is certain.

That kid is very lucky, you two will be amazing parents.

And thank you for donating to science.

Thank you! We are counting down the days until we get to meet her

Sorry for the late replys, just a small question, do you plan on telling her about all of this and when will you do it ?

We will tell her one day. Most likely when she is around 16 or so....when she is old enough.

Natural Selection is becoming less potent as the world becomes safer, without it mutation will go unchecked from one generation to the next...

How does it feel knowing this form of screening will become essential in the future to stop the regression of the human species?

I am honored to be one of the few that has experienced it so far. If everyone that was a carrier of beckers MD went through this then the disease could go into the history books

My boyfriend talked about picking the gender of our second child. I still don't know how I feel about it. I don't think I'll be too disappointed if I end up with two of the same sex.

It is pricy. And the woman has to go through a lot more then the man does. If you can have healthy kids naturally I would defiantly suggest that.

How did you/your wife know she is a carrier?

Through her brothers. They showed signs of MD and then were checked. After it was confirmed we decided to get her tested.

I just wanted to tell you that this is such a great thing you decided to do. I hate to say it but when some people with diseases that are 50%+ chance carrier decide to have kids, especially with no prior genetic testing, it just seems to selfish to me. This is an amazing decision and your children will thank you, even if for some small chance they are still carriers. At least you did everything you could to ensure their future health.

That is exactly how we viewed it too.

How much did this procedure cost?

Were there other character traits that you were allowed to pick and/or did pick?

15-20k and we could not choose anything else

How much was the procedure?

15-20k

I have to say OP this is a pretty awesome story. I have a serious congenital heart disease and it's always played on my mind about having children. Seeing what my parents have had to live through watching their child with a serious medical condition isn't fun.

While I admire the strength of parents who do this I also think that it's incredibly unfair to them. While my parents would never admit it I do feel that I am partially responsible for some of their relationship difficulties and a burden (to a point).

How awesome is science! As others have said watch Gattaca! With your wife!

I don't think I have a question. Post a picture when she is born and let us all know how she is!

We will...we already have her room all set and ready for her. :)

This reminds me of GATACAA or however it is spelled, the movie about genetic superiority, and the perfect genes. Can you pick other things too, like hair color, height, intelligence? Or is this the beginning and you can only determine certain things? Cool AMA.

It is just the start...but we all know the sky's the limit

Good for you. Its better to be informed & in control of these situations.

I agree

Hey! My dad does exactly this for a living! The past week I worked in his lab burning holes in a protective wall around research embryos so we could test them.

Uh... AMA I guess?

Do it!

And judging from your username if you live in Michigan he might of worked on our embryos

How much does this cost?

15-20k...we haven't added them all up, just a rough estimate. We also have to pay each year to keep the embryos frozen

PLEASE post an update of how your family is doing post-birth. My husband has Nemaline Myopathy, which is a very rare form of MD. While we are still several years from even thinking about starting a family, we are beginning to look at our options. It sounds like the probability of passing on the disease is the same - 50%. I don't know yet if I'm also a carrier, but we would obviously undergo genetic testing as our first step. If this method works out for you and your wife, I would really like to know. It sounds way more expensive than we could probably afford, but it still might be something worth looking in to. I am excited for you and your wife, and I hope your daughter is beautiful, happy, and healthy. I'm wishing so much luck to you all!!! And don't forget... PLEASE post an update!!!!

I will do an update in the fall when she is here. I promise

I know I'm way late, but if you get on later and decide to answer more: would you consider using this process if there was no chance that your children would develop such a disease? In other words, if neither you nor your wife were affected with nor carriers of some debilitating disease, would you ever consider the proceedure? What do you think of the ethics behind such cases (of being able to choose your children just because you want a certain type of child and not because you want to give them a healthy life)?

If our children weren't as risk then we would not of done it. It's been expensive, and hard on my wife. Having sex is way more appealing to us. But we had to do the right thing. As far as the ethic behind it. We are both pro choice and I think the parents can do whatever they like with their embryos. If a couple wanted to spend the money to make sure they had a boy or girl then more power to them.

This is, obviously, a very sensitive matter if Religion and such happens to get involved - although I'm assuming you didn't have any such problems, other people might say you were 'playing God' in a very negative way. It's good to hear your girlfriend is having a healthy pregnancy though.
I just want to know two things; coming from my secondary school knowledge of genetics, wouldn't you both have to be carriers for your children to have MD? Also, where do you draw the line at this sort of selection - would it be wrong to screen for other traits?

Only female carriers can pass this type of MD to the next generation (it is closely related to the much more severe Duchenne MD) Where do you draw the line? When it affects the health of your children.

Couldn't you just adopt instead?

Or get a cat?

We could have adopted, but we wanted our own kids if possible. And we already have two cats!

Why not just have kids and accept and love them medical difficulties and all instead of trying to play God and pretend that you can create the perfect child?

I will love them either way. But to avoid a painful, agonizing genetic disorder, I would do anything within my power to help ensure they are healthy. :)

shame on him for wanting a healthy child, right?

some people, given the choice, would rather not have a child with such a debilitating disease. it's his choice, really. people do play God now, and it's proven helpful for many.

I was born with hydracelphalus, cereberal palsy, a deformed left hand, so don't even try to talk down to me as though I don't know what it is to have setbacks. I may not be able to do some things, and may not be able to do others as well or as quickly as others, but I wouldn't change a thing if I had it to do over again; my disabilities have given me a perspective on life that I wouldn't otherwise have; they have taught me that there's more to people than their superficial outward shell.

I made no personal attacks in my comment. still, I'm sorry to hear about your disabilities, it must not be easy. I'm sure it has given you a fresh perspective, unique from one that a person free from disability would have.

that being said, being disabled is not the only way to gain a fresh perspective. it certainly is not the most convenient, either. some people also may not want the financial burden that being disabled comes with. I'm sure OP doesn't, his bill is high enough already.

my point is, he is just trying to give his children the best life possible. I'm glad you've come to terms with your disabilities and found positivity in them, really, that's wonderful. I know I wouldn't have the positivity you do if I was in your situation. but don't denounce the poor guy for trying his best for his kids. he's just doing what he feels is right.

Thank you