Where Do We Draw The Line? — 5 Minutes for Special Needs

Where Do We Draw The Line?

by Tammy and Parker



                               

Could this ‘one stop’ screening test be the first step in the creation of Designer Babies?

What are the pros and cons or screening embryos for inherited genetic disorders?

Leave your thoughts in the comments section below.

As scientists announce a new ‘genetic MOT’ for IVF embryos that will test for almost any inherited medical condition, one fertility doctor asks: where do we draw the line?

The new technique, called karyomapping, checks the DNA of the embryo against samples taken from other family members to see if it has inherited any kind of defect.

It applies to IVF embryos that are created in a laboratory and then screened before being implanted into the mother’s womb, with the implication that ‘flawed’ embryos will be destroyed.

The researchers behind the discovery say that theirs is a “universal method” that will allow parents to test for far more genetic conditions than the few that are detectable at the moment.

But many fear that any method which screens out ‘defective’ embryos could lead to tests for a broader range of characteristics, like intelligence or looks.

Earlier this year a deaf couple sparked controversy by calling for the Bill to allow them to deliberately select a deaf child from embryos created by IVF.

Dr Mark Hamilton, chairman of the British Fertility Society, pointed out that this new test will raise ethical questions.

He said: “We can currently test for several hundred conditions, but the claim is that the spectrum of conditions which could be screened for is enormous.


“But obviously, the ethical question is, if you can screen for anything, where do you draw the line?”

Prof Alan Handyside, who developed the test, will have to apply to the Human Fertilisation and Embryology Authority (HFEA) for a licence to use it.

A spokeswoman from the HFEA said its licensing committee would be able to set conditions on what it could be used for.

The research has been announced just days after the passing of the Human Fertilisation and Embryology Bill in the House of Commons.

One of the most controversial things the Bill allows is the use of embryo screening techniques to deliberately select an embryo that will be able to provide donor tissue for a sick older brother or sister.

Even advocates of embryo screening like Prof Robert Winston are concerned. In May he said: “My first worry is the psychological risk to the saviour sibling.

“It’s an awful situation when you have to tell a child they were born to save another. We don’t yet know how that will turn out but the psychological damage could be profound.

“I’m also unhappy that saviour siblings could be put under undue pressure to give bone marrow or organs — in short used as a source of spare parts — to help a sick sibling survive.”
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Tammy and Parker also hang out at their other blog- Praying For Parker- where they are counting down the days to an ostomy bag free life.

Email Author    |    Website About Tammy and Parker

I am the mother of 5 wonderful kids. My youngest, Parker, is a medically fragile blessing with Down's Syndrome. I am @ParkerMama on Twitter.

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1 Barbara October 29, 2008 at 4:31 pm

You have great courage, Tammy, already evident in previous posts. Today your courage prompts me to admit my trepidation for commenting on this issue. I must not be the only one, this late in the day, and there are no other commenters.

You ask the ‘$64-million’ question (post title). And you show potential consequences to the decisions that may seem sensible all by themselves.

I have questions, too. The possible answers to every one of my questions comes back to whether there is any good-enough reason to elect to kill a human life while she/he is still forming?

2 candace October 29, 2008 at 5:10 pm

I do not have a special needs child but in no way would I elect to take my child’s life if i was screened and the test came back for some disease. I do have exceptions but only that if the baby was deemed to have no brain,etc.(A friend of mine had this happen). Even with that it would be a decision that would take awhile to make. My husband and I have long ago made the stance that come what may we would face any decision this great together, trustin God knows what best. Children’s lifes are way to precious to be throw away because they may have Down Syndrome,etc.

3 Tammy and Parker October 29, 2008 at 10:52 pm

Interestingly enough, I have met several Mom’s of kids with special needs that wish they had known prenatally. The would have chosen to abort in a heartbeat.

Even knowing their child now.

I won’t deny that it is a hard concept for me to wrap my mind around. Parker’s extra chromosome was never an issue for either Reed or I.

But I know some feel differently, and wanted to give them the opportunity to express their views as well.

Plus, I think asking where does one draw the line is a very valid point.

Opps. This baby will be born with blue eyes. Well, shoot those won’t match all my other kid’s brown eyes.

4 Jen October 30, 2008 at 12:14 am

As a mom to two girls with one of those inherited diseases, this was to me a break through in one way. For a disease like Alpha-1, which is what my daughters have, being detected before or at birth is a blessing. Avoidance of all things bad for their lungs and livers is critical to their health. So in one way, I’m so excited to see this development.

And I may be sticking my neck way out on the line with sharing this, but after my oldest daughter was diagnosed, I did investigate pregenetic diagnosis as an option for having a child without Alpha-1. I was still so very much in shock and afraid and feeling guilt over having passed the disease onto my daughter. Ultimately, it is a very personal decision. For us, the decision was taken out of our hands in a surprise, surprise pregnancy, which resulted in my beautiful micropreemie Meghan, who also has Alpha-1 like her big sister.

So, do I think we should choose eye color or other skin deep features for our children? NO

But I do know this, there are so incredibly awful genetically passed diseases that result in much pain and suffering for the children. I can see how those parents might not want to inflict that onto other possible children.

So, my point is that I don’t think we can draw a line on this. It is a personal decision for both parents of a potential baby to weigh carefully. Will individuals stretch beyong the true intentions of the researchers who made the break through? Absolutely. These things can and do happen in our free society. So, there’s my 2 cents. 😉 Jen

5 Sandi October 30, 2008 at 8:35 am

It seems that every scientific breakthrough with potential benefits also opens the proverbial “can of worms” creating many moral and ethical dilemas (some of which we haven’t even thought of yet).

I think Jen hit the nail on the head…can a line really even be drawn? Who gets to decide? Ultimately it should be the parents decision. But there is certainly potential for abuse.

As for “Savior siblings”…after reading Jodi Piccoulet’s “My Sister’s Keeper” I can barely wrap my mind around this. Though fiction, it really drives home both the psychological, physical and moral issues faced by a family in this situation.

And maybe this is a bit farfetched, but I have to wonder how long it will take health insurance companies to jump in and refuse coverage on a child from birth after testing reveals a “pre-existing” condition. How long before federal and state funded programs refuse services to these same children? In the future will we basically be told “sorry, you’re on your own” since the only way to have a child with a disability or illness is by “choosing” to have that child? And if it did come down to that, would it not, in reality, negate “choice” for all but the independently wealthy? A line drawn.

Just some things to ponder.

6 Heidi October 30, 2008 at 2:38 pm

I’m not sure I see how they can screen for all these. I was told by doctors in the field of fetal diagnosis that the cause of only 20-30% of birth defects was known, so if you don’t know the cause, how can you screen for it?

7 Jen October 30, 2008 at 5:14 pm

Heidi,
I think they are screening for inheritable disorders which is a bit different from birth defects. My children have a genetically passed disorder called Alpha-1, and it is not referred to as a birth defect. I hope this information helps.
Jen

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