Paying To Have A Child Who Doesn't Have A Genetic Disease
We got our dog from breeders who screen the parent dogs to see whether they were carriers of various heritable diseases, and register the results. This is no guarantee that a dog will be perfectly healthy; but it's a very good start.
It's now becoming possible to do that with human children -- through genetic testing of embryos while they're in the lab dish, screening out embryos that had inherited (in the case in this story) a particular genetic mutation.
Laura Hercher writes at MIT Technology Review:
It would be expensive--costs for IVF in the US average over $20,000 for each try, and testing can add $10,000 or more. And it would require an unpleasant two-week process of ovarian stimulation and egg harvesting. "It wasn't the way I saw myself making a baby," Olivia told me. But they wanted what the procedure could offer them: a guarantee that dystonia was eliminated for the next generation, and beyond.Matthew and Olivia don't think of themselves as having a "designer baby." That term has negative associations, suggesting something trivial, discretionary, or unethical. They weren't choosing eye color or trying to boost their kid's SAT score. They were looking out for the health and well-being of their future child, as parents should.
Public opinion on the use of assisted reproductive technology consistently draws a distinction between preventing disease and picking traits. The Johns Hopkins Genetics and Public Policy Center, which contacted over 6,000 people through surveys and focus groups from 2002 to 2004, summed up its findings this way: "In general, Americans approve of using reproductive genetic tests to prevent fatal childhood disease, but do not approve of using the same tests to identify or select for traits like intelligence or strength." The dystonia gene is in a gray zone--some people born with it live perfectly healthy lives--yet presumably few parents would criticize Matthew and Olivia's choice to weed it out.
All embryo testing does fit the "designer" label in one important way, however: it is not available to everybody.
Matthew and Olivia opted in to what is a quiet but significant trend. Although the number of couples using this technology remains small, it is growing rapidly. According to the Society for Assisted Reproductive Technology, the number of US IVF attempts with single-gene testing rose from 1,941 in 2014 to 3,271 in 2016, an increase of almost 70%.
This is only the beginning. As the price of genetic testing of all kinds drops, more adults are learning about their genetic makeup as part of routine medical care and discovering specific genetic risks before pregnancy. But these people are still most likely to be affluent and educated, like Olivia and Matthew. While they consulted with IVF clinics, Olivia's own brother and his wife got news of a gene that increased risk for cancer in their kids. "If you could get rid of it, why wouldn't you?" he asked.
The end of the piece:
Our discomfort around designer babies has always had to do with the fact that it makes the playing field less level--taking existing inequities and turning them into something inborn. If the use of pre-implantation testing grows and we don't address these disparities, we risk creating a society where some groups, because of culture or geography or poverty, bear a greater burden of genetic disease.What could change society more profoundly than to take genetic disease--something that has always epitomized our shared humanity--and turn it into something that only happens to some people?
Cell phones used to be big cement block-like deals, affordable only to the very rich. In a relatively short time, however, they became widely available.
It seems there's always a lamenting that things are only available to the wealthy. Well, in this case, it's great that this technology is available to those who can afford it. Possibly one less human being on the planet enduring physical suffering...how is that a bad thing?
via ifeminists








Lamenting the fact that advanced procedures aren't already available to all?
Well, get your degree in advanced weeping, because most of the world has no access whatsoever to any particular procedure you'd care to name. There's a distance in time and space between any particular malady and the means to fix it.
This has been a point missed in discussion about health care in the USA: you can't get everyone to the MRI machine, etc., in time to apply even the basics.
Radwaste at October 23, 2018 3:03 AM
Poor people have always born this burden. Helen Keller lamented the fact that many more poor people were born deaf and/or blind.
Helen Keller’s family was wealthy enough to be able to pay for a private tutor. Most can not.
My son carries the deaf gene. Luckily, his wife does not, so there is no issue. They were prepared to go this route.
Jen at October 23, 2018 4:55 AM
We already have this for a number of diseases. Ever heard of sickle cell anemia? The original tests were quite expensive and only the rich could afford them. Now they are fairly inexpensive. But even so if you don't show a family history you won't bother paying for the test. Spina bifida, Downs Syndrome, Tay–Sachs disease, among others are all commonly tested for genetic diseases. This is just expanding things.
Ben at October 23, 2018 6:54 AM
Great point, Ben, on these diseases. Better, more on-point example than my cellphones one above.
Amy Alkon at October 23, 2018 8:26 AM
As Ben pointed out, testing for inheritable diseases isn't new. As time goes by and technologies improve the cost goes down.
Until now a couple could have genetic testing to see if there is a genetic predisposition for some defect and then choose not to have a baby, or have the baby and take their chances. Or they could get pregnant, have the unborn baby tested, and have an abortion if the baby has a defect.
Using IVF and then testing the living embryos to find the one that doesn't have the defect is going a step further - no abortions and no wasted pregnancies, though some might say destroying the unwanted embryos is the same as an abortion.
I think the next step, in the near future, will be using designer drugs during the IVF process - perhaps monoclonal antibodies that target sperm or ova that have the genetic defect - to prevent the creation of a defective embryo.
Thank God for a capitalist country like the USA that has enough wealthy people with the money to motivate scientists, investors and entrepreneurs to pursue these expensive dreams available only to the rich, that eventually become affordable realities available to almost everyone.
As the cost of these technologies goes down insurance companies may find it cost effective to pay for designer babies and not run the risk of paying for the medical treatment and care of babies born with genetic defects and diseases.
Ken R at October 23, 2018 8:38 AM
Every-new-technology-starts-out-as-a-rich-people-toy.-Eventually-if-enough-rich-people-buy-it,it-becomes-available-for-all
NicoleK at October 23, 2018 9:12 AM
There is also some good technology on the horizon for full gene editing, both embryo and adult. When any of that will become commercial is anyone's guess.
At that point there is a valid concern about reducing the variability in the gene pool leading to higher risks of a single disease ending all human life. But there is also an equal likelihood that genetic variability will increase as genes become like apps and one could add or remove them at will. In the end one must trust future generations to deal with their own problems.
Ben at October 23, 2018 9:35 AM
https://www.psychologytoday.com/us/blog/hive-mind/201809/art-atta keep
We've just completed a (fairly) large survey on attitudes to ART here in Ireland. Details above. The take-home is that we need to face up to some concerns that technology is making front and center, but that we'd often rather leave to fate.
Rob King at October 23, 2018 12:59 PM
We have just completed a reasonably large scale study of attitudes to ART here in Ireland. The take-home is that we need to face up to the realities of many things we leave to fate.
Robert King at October 23, 2018 1:13 PM
Gattaca is a pretty good low key scifi movie that deals with this issue
lujlp at October 23, 2018 6:34 PM
I am not anti-abortion at all, but I would imagine that if you believed life began at conception, then these procedures would be right out. And if I was a venture capitalist, (again, I'm not), I would not want to invest in a company that could be put out of business by a pro-life based law outlawing this type of procedure, upheld by a newly more conservative Supreme Court.
Again, I'm pretty sure I agree with you, but that's where the push back would be, in addition to any "fairness" concerns...
clinky at October 23, 2018 7:04 PM
> I am not anti-abortion at all,
At *ALL*? Like, can you ever imagine a pregnancy for which abortion isn't the appropriate response?
Crid at October 23, 2018 11:22 PM
C.J. Cherryh's Hammerfall is a good book about the other side compared to Gattaca. Want to lose weight, take a pill. Nanomachines will take the fat right out of you. Want a new radio with all the new features, take a pill. The radio is inside your brain. Change channels with a thought. Want color change skin so you can look really cool at the rave, take a pill. Now you are the disco ball.
And live in mortal dread of hackers. When your PC is in your brain getting your computer hacked is far more terrifying.
Ben at October 24, 2018 6:15 AM
Society is not prepared for the ramafications of germ line gene edited designer humans.
Screening for genetic markers that lead to serious medical issues is one thing... however, generating significant genetic differences between the rich and poor is a recipe for social disaster.
Artemis at October 24, 2018 7:50 AM
Society is not prepared for the ramafications of germ line gene edited designer humans.
Give us a gun and we shoot our own foot off. Give us something that makes us feel good, we become lethally addicted to it. After all this time, I think we really aren't much more than clever monkeys. The most clever will always create new things that the rest of have no idea how to use wisely.
bkmale at October 24, 2018 8:02 AM
"Society is not prepared for the ramafications of germ line gene edited designer humans."
Your society perhaps, Arty. And if such things become cheap enough your society will have to adapt to it.
Ben at October 24, 2018 8:56 AM
Ben,
You do realize that we live in the same society right?
Society in general is not prepared for those ramifications. Just like it is not prepared for the emergence of general intelligence AI.
What you are going to have to come to grips with is that society is not infinitely adaptable.
Just like when the selection pressures become too great for a species they often go extinct... a society can go extinct as well when the pressures applied to it exceed its ability to cope.
I don't get the feeling you truly appreciate what the difference would be like between you and a fully gene edited human being.
Just like a bonobo is probably nor prepared to raise a human baby properly... you are not prepared to raise that kind of a child.
These will not be minor differences Ben... we cannot expect bonobos to "adapt" to the challenges of properly raising a human child.
Similarly we cannot expect prototypical human beings to "adapt" to the challenges of properly raising a fully gene edited designer child.
I think you are really underestimating just how different such children will be... they won't just be a little smarter than you... to such children you will be a complete and utter buffoon.
Artemis at October 24, 2018 9:08 AM
Ben,
Just to put things into perspective for you... native American societies collapsed with the introduction of European diseases and exposure to firearms.
That is a smaller difference that what we should expect from the introduction of fully gene edited designer children.
Society in general... the one you live in too... is not ready to cope or adapt with that kind of change at the moment.
Those kinds of introductions take careful planning and care to avoid mass negative consequences. I don't get the feeling you are the careful planning type when your attitude is that as soon as it becomes cheap enough we should just run rampant and deal with it on the fly.
Artemis at October 24, 2018 9:17 AM
Ben,
Last point... Australian society couldn't accurately predict the general devastation caused by the introduction of cane toads. Yet here you are confidently asserting that society in general will just casually adapt to what essentially amounts to the introduction of a new hominoid sub-species.
How exactly did that work out for Neanderthal society?
Did they adapt... or did their societies get wiped out?
Artemis at October 24, 2018 9:22 AM
Do we live in the same society Arty? After all your society isn't ready for significant genetic differences between the rich and the poor. My society has had that for quite some time. Other societies too. Look at Europe. Thanks to feudalism there is still a significant genetic difference based on class.
The issue is Arty is once again trying to authoritatively expound on something he hasn't a clue about. You don't know where this technology is going. You don't know what consequences it will have. All for the simple reason it doesn't exist yet. You don't know the details because there aren't any.
The sorrow of Dunning-Kruger club is you don't know you are a member.
Ben at October 24, 2018 11:23 AM
Ben Says:
"Do we live in the same society Arty? After all your society isn't ready for significant genetic differences between the rich and the poor. My society has had that for quite some time. Other societies too. Look at Europe. Thanks to feudalism there is still a significant genetic difference based on class."
No Ben... there actually isn't. There are no significant genetic differences between the rich and the poor.
It would be impossible for you to get a genetic sample from a person and tell what their financial status was.
I have no idea where you are getting this information from, but you are so fundamentally wrong it is astonishing.
"The issue is Arty is once again trying to authoritatively expound on something he hasn't a clue about. You don't know where this technology is going. You don't know what consequences it will have. All for the simple reason it doesn't exist yet. You don't know the details because there aren't any."
Actually Ben... once again I have knowledge and understanding that you do not possess so you assume there is no information to be had.
It is reasonable to speculate on the current capabilities of a CRISPR type gene editing technology to see what would be possible if things were left to go in a market-based system.
We already use this technology to insert new genes into single-celled organisms for study and plants that should make it to market within the next ~2 years.
What you fail to appreciate is what a truly scary prospect this would be if we just let the rich design their children by specifically editing in or out a set of genes during the very earliest stages of development.
To give you an idea of what is possible, this type of technology can insert specific genes from one species into another.
So no... society is not prepared to deal with that kind of gene editing at the germ line level.
"The sorrow of Dunning-Kruger club is you don't know you are a member."
You certainly have that part right Ben.
Artemis at October 24, 2018 6:30 PM
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