Friday, March 27. 2015
It is very possible that the United States may follow the United Kingdom's lead and sanction the genetic engineering of future generations using technologies that create human embryos with the genetic material of three people. If Americans do not express our concern over these "mitochondrial replacement" (MR) procedures, which are very similar to the cloning technique that produced Dolly the Sheep, I fear MR will soon be offered by fertility clinics here.
If you need some back ground on MR watch this BioTalk video where Chelsea Zimmerman and I discuss MR and how the UK has just approved GMO children.
NMBarry at CatholicStand has posted a call to action. She reports that the Food and Drug Administration (FDA) has asked the Institute of Medicine (IOM) to convene a committee to discuss mitochondrial replacement. The committee is taking public comments. Please let them know how you feel about the genetic modification of future generations. You can e-mail them at MitoEthics@nas.edu.
Here is the letter I wrote to the committee. Please feel free to use any or all of it. Just please let them know what you think!
Dear Committee on Ethical and Social Policy Considerations of Novel Techniques for Prevention of Maternal Transmission of Mitochondrial DNA Diseases:If you are in the Washington DC area you can make your opinions known in person. The meetings are March 31 and April 1, then again May 19. The registration deadline for public comment during the March 31 and April 1 meetings is today! Register here.
Tuesday, March 3. 2015
I will be honest. I am tired. I am angry. I am frustrated. This is likely an uncharacteristically emotional post because, after nearly a decade of writing about biotechnology, I am uncharacteristically horrified.
The UK has officially approved the creation of embryos with three genetic parents, and babies created with this technique are likely to be born within the next year.
This is unprecedented. The UK government has officially sanctioned the germ-line genetic engineering of its citizens and their decedents. British children (and their children, and their grandchildren) will be genetic engineering experiments. Horrifying.
Many experts are concerned about the safety of the technique. They think the invasive, cloning-like procedure is sure to cause birth defects. Even a well-known pro-ESC, pro-cloning scientist urged the UK not to move forward. The reality is that any baby not developing normally will be aborted, and we will likely never hear about the "failures" of this radical experimentation. Horrifying.
Others are rightly concerned that this will open the door to more invasive and extensive engineering. It is not out of the realm of possibility, especially since the UK just changed the definition of "genetic modification" to allow this technique to bypass current laws against germ-line genetic modifications in humans. Future linguistic gymnastics surrounding human genetic engineering is probable. Horrifying.
But what I find even more horrifying is the silence. Silence from Catholics, pro-lifers, and the general public. I find it deafening.
Continue reading at Creative Minority Report>>
Friday, February 20. 2015
At a time when more and more people are becoming wary of generically-modified foods in their diet, the United Kingdom is poised to begin creating genetically-modified children with the genetic material of three people, two women and one man; a genetic combination that could not occur naturally.And the way the UK goes, the United States may soon follow.
The average person may feel totally overwhelmed by the science and helpless to do anything about it. Unfortunately, we cannot stick our heads in the sand and do nothing. If we ignore this problem it will not go away. If we stay silent we will live in an insane world where people won't eat genetically-modified food, but will turn a blind eye to genetically altering the next generation.
There are things you can do:
1. Educate yourself. Learn about the three-parent embryo technique and how it is a germ-line genetic engineering technique similar to cloning.
2. Share news stories about the creation of three-parent embryos in your social media. Tell people that there is more to consider than just what is on the surface. This is the genetic-engineering of human beings that will affect generations. Also, it is not just being proposed to help mitochondrial disease, a very serious, sometimes fatal, condition, but it has also already been proposed as a treatment for infertility. If your friends are wary eating of GMO foods, they should find this terrifying.
3. Tell people that this technique has not been proven to be safe in animals or humans. There are excellent statements by scientists who are concerned about the safety of the technique here, here and here that you can share. These scientists are rightly concerned that the invasive nature of the procedure will do more harm than good. Get people thinking about what happens when something goes wrong. Will abortion be the "back-up" plan for any baby not developing normally?
4. Sign this petition to the UK House of Lords, the next stop on the approval route, urging them to reject any germ-line genetic modification of human embryos. I bet if this was the introduction of a new genetically-modified food to the grocery shelves it would easily have hundreds of thousands of signatures. Challenge yourself and your friends to show the same concern for the creation of GMO kids.
Tuesday, February 17. 2015
When the UK Parliament voted to allow the creation of genetically-modified children with techniques mislabeled as "mitochondrial replacement" it seems many in the scientific community believed this was progress.
Why would the UK allow the creation of genetically-modified children? It is an attempt to "prevent" the inheritance of disease caused by mutations in mitochondrial DNA (mtDNA). Mitochondria are small power-generating organelles in our cells that contain their own DNA. We inherit our mtDNA solely from our mother.
UK fertility clinics are now one step closer to creating and transferring embryos that have the genetic material of three people, two women and one man. The babies will have the mtDNA of a donor woman and the nuclear DNA of mother and father.
There are those scientists that are speaking out against these techniques, that are very similar to cloning, saying that there is evidence that is being overlooked. Others are pointing out that this is indeed experimentation on children and it cannot be performed in an ethical fashion.
Here are two videos by biologists that are must-see TV for everyone. Take 10 minutes and educate yourself on the dangers of these techniques and then inform others.
I know they may seem "over your head" but if everyone ignores these tough issues, we will end up being a backward society that fears eating genetically-modified food but then turns around and genetically alters our children.
The first is an informative interview with Prof Stuart Newman, Professor of Cell Biology and Anatomy at New York Medical College. Note at minute 2:55 Dr. Newman asks, "What if you get a person that is impaired from this procedure? Do you discard the experimental outcome?" Of course the "experimental outcome" is a child. There is no doubt that abortion will be used as a "fail-safe" to destroy any babies that are not developing normally.
The next video is a short one with Dr Edward Morrow, Senior Research Fellow at the University of Sussex. He points out that not all of the evidence regarding this technique has been evaluated with proper weight. New important research is being disregarded.
Tuesday, February 10. 2015
Logic purists will always call the appeal to the slippery slope a fallacy. You cannot argue against A just because it might lead to B.
Mitochondrial donation involves the merging of three people’s DNA into a single embryo (Rex)
Unfortunately in the our Brave New World of anything-goes biotechnology, the slippery slope is very real. It is an appeal that I use all the time because, these days, in reproductive medicine, A does lead to B. There are no lines that people are willing to draw if it curtails the mythical "reproductive rights."
Case in point, the three-parent embryo. This technique was developed as a way to "prevent" terrible, life-threatening, mitochondrial diseases from being passed from mother to child. Whether correctly or not, the UK House of Commons and other proponents of the technique believe that the health benefits to the child outweigh the risks of using a procedure similar to cloning in the IVF process.
But now the scientist that developed one of the three-parent techniques, wants to use it not to "prevent" disease in a child, but as a treatment for infertility. In other words, he wants to use it not for the benefit of the child, but for the benefit of the potential parents.
In our age of "reproductive rights" see how quickly the focus shifts from the good of the children to the desires of the parents?
As women age, their eggs become less likely to yield a viable pregnancy. That may be due to aging factors like mitochondria in the cytoplasm of the egg. Taking the nucleus of an aging egg and placing it in a "young" donor egg would give older women the chance to have genetically-related children. It is also the very same technique used for "replacing" diseased mitochondria. It is genetic engineering of the egg that would create children with three genetic parents: two women and one man.
Dr Shoukhrat Mitalipov wants permission from the U.S. Food and Drug Administration to use the three-parent embryo technique he developed as a new fertility treatment for older mothers. The Independent has the story:
Dr Shoukhrat Mitalipov, a world authority on embryo manipulation, said he had requested permission from the US Food and Drug Administration (FDA) to conduct trials of mitochondrial transfer as a treatment for age-related infertility. He said the parliamentary vote last Tuesday, when MPs overwhelmingly approved the “three-parent” baby technique for creating IVF babies free of mitochondrial disease, has bolstered his case with the US regulator.The immediate call for the use of this untested, possibly unsafe, treatment as a new tool in the infertility tool-belt is a harbinger of things to come. It took less than a week for this shift of focus from the child to the parent. How long before the call for real "designer babies" where parents get to engineer the genetic make-up of their child?
This reproductive slippery slope is very real, and it is getting more slick every day. To protect the future generations from the genetic whims of the previous, we have to put a stop to human germ-line genetic engineering now.
Hat Tip: Center for Genetics and Society
Tuesday, February 3. 2015
Oh Huxley, what is your beloved country about to do?
In a historic vote that will likely go down in infamy, the UK House of Commons has given the go-ahead to the creation of three-parent babies. The vote was 382 to 128 to legally sanction the creation of genetically-modified children. The House of Lords will debate on the issue next, but according to BBC News, "The first attempt could take place this year, which could lead to the first birth in 2016."
Why would the UK allow the creation of genetically-modified children? It is an attempt to "prevent" the inheritance of disease caused by mutations in mitochondrial DNA (mtDNA). Mitochondria are small power-generating organelles in our cells that contain their own DNA. We inherit our mtDNA solely from our mother.
UK fertility clinics are now one step closer to creating and transferring embryos that have the genetic material of three people, two women and one man. The babies will have the mtDNA of a donor woman and the genomic DNA of mother and father.
The techniques used to create children with three genetic parents are often called mitochondrial replacement (MR) or mitochondrial transfer (MT). These are misnomers. They make it sound like the little organelles in a woman's egg are being replaced. No big deal, right?
But what is actually happening is a whole genome replacement, a swap of the nucleus of one egg into another, much like the cloning technique that created Dolly the sheep, the first mammal cloned from an adult cell. In other words, the House of Commons has given the go ahead to techniques that are very close to the same procedure that has repeatedly produced animal offspring with major birth defects.
Stuart A. Newman, Professor of Cell Biology and Anatomy at New York Medical College, has a great expose at the Huffington Post about the dangers and deception that surround so-called mitochondrial replacement, which he calls by their proper names "maternal spindle transfer" (MST) and "pronuclear transfer" (PNT). Newman writes:
But this is only mitochondrial replacement in the sense that someone who moves into a new home may experience "refrigerator replacement," i.e., only by employing a highly idiosyncratic (and misleading) use of the term....What Dr. Newman is saying, in layman's terms, is that these techniques are very invasive and disruptive and so the children produced with these procedures are at great risk. There very lives will be an experiment in human genetic modification.
Dr. Paul Knoepfler, a vocal American stem cell researcher, agrees. In an open letter to the UK Parliament, he warns:
Even if hypothetically this technology might help avoid some people from having mitochondrial disorders (and that’s a big if), the bottom line is that there is an equal or arguably greater chance that it will tragically produce very ill or deceased babies.Even more horrifying is that this genetic manipulation would be passed down from generation to generation. It is genetic experimentation on those who cannot consent.
We are at a very steep precipice. If the UK does begin to create genetically-modified children as it seems poised to do, this may change everything. This will open the door to even more radical genetic manipulation, and with new DNA editing techniques emerging, it may be a perfect storm precipitating the advent of designer children. The genetics of future generations will be at the mercy of our whims. Their health and well-being tossed aside in favor of parental desires.
I pray this tsunami can be stopped before we are drowned by our own advancements. No child should ever be a genetic experiment, ever.
Tuesday, January 20. 2015
In science fiction movies, it seems like it is easy to edit the genetics of a living organism. In reality, it is very, very difficult. A new technique in genetic engineering is creating quite a buzz in the genetics world because it allows researchers to do just that: edit the DNA of living cells.
It is called CRISPR and it uses an enzyme discovered in bacteria that can target a specific sequence of DNA and cut it. Bacteria use this enzyme as a kind of immune system targeting, cutting and disabling the DNA of viruses attempting to infect the cell.
Researchers have adapted CRISPR for use in plant and animal cells and can use the technology to precisely edit DNA at a very specific point. They can use CRISPR to silence genes or add new genes into the cells of a living organism. Scientists have been able to use CRISPR to introduce targeted mutations into yeast, plants, mice, rats, pigs and even primates.
CRISPR is not just revolutionizing genetic research, it is forcing us to have a much needed conversation about the genetic engineering of humans.
Ideally CRISPR will only be used for gene therapy in humans, fixing a defective gene in a patient with genetic disease. But CRISPR technology could be used for virtually anything, including creating true designer children with DNA specified by parents.
Continue reading at LifeNews>>
Monday, January 19. 2015
Ilya Somin at the Washington Post highlights a survey conducted by the Oklahoma State University Department of Agricultural Economics that found that over 80% of Americans support the “mandatory labels on foods containing DNA."
Insert groaning and a collective face palm.
Continue reading at Creative Minority Report>>
Monday, November 3. 2014
Paul Knoepfler, a vocal stem cell researcher, has penned an open letter to the UK Government asking for them to put the breaks on the three-parent embryo. I post it in its entirety because the whole thing needs to be read. It is important to understand that it is not only pro-lifers that object to this genetic experimentation on children. There are those who lean much farther left that do as well. And while I do not agree that PGD is a moral alternative as Dr. Knoepfler suggests, I think the letter is overall excellent and I thank Dr. Knoepfler for writing it.
Open letter to UK Parliament: avoid historic mistake on rushing human genetic modification
Wednesday, October 29. 2014
Following up on my piece Orwellian Deception: Three-Parent Babies Okayed in the U.K. where I outline how the government in the United Kingdom quietly changed the definition of "genetic modification" to exclude the three-parent technique which would allow three-parent children to be made in fertility clinics, I found this article from The Independent where the government's chief medical officer, Dame Sally Davies, defends the deception.
Essentially, the argument is this: mitochondrial DNA (mtDNA) is outside the nucleus, not part of the 46 chromosomes that most people consider to be what makes us who we are, so when mtDNA is "switched out" that does not affect what makes us who we are, and so therefore does not constitute "genetic modification." Dame Davies explains:
In oral evidence to the House of Commons science and technology committee, Dame Sally explained that she wanted to make a clear distinction between the 37 genes of the mitochondria – the energy "factories" of the cells – and the 23,000 or so genes held within the chromosomes of the cell’s nucleus.Except evidence from animal and human studies indicate that variations in mtDNA may affect things well beyond just energy production. Case in point, this study of variations in mtDNA where researchers found a correlation between mtDNA and personality traits like extroversion. Their hypothesis was formulated from the association of mtDNA variations and psychiatric disorders like schizophrenia and bipolar disorder. The researchers write:
Previous studies have suggested a role of mitochondria and their DNA polymorphisms in neuro-psychiatric disorders, including Alzheimer's disease, Parkinson's disease, schizophrenia and bipolar mood disorder. Thus, we hypothesized that mitochondrial DNA polymorphisms might be related with the development of personality. The present study investigated a role of two mitochondrial DNA polymorphisms, the C5178A and A10398G, in personality traits evaluated using the NEO PI-R scores in 238 healthy Japanese volunteers. Subjects with the 5178A genotype showed significantly higher extraversion score than those with the 5178C genotype...Although further studies are recommended for the confirmation, the result may suggest a role of the mitochondrial DNA polymorphism in the personality trait.These kinds of findings are what made New Scientist do an about-face regarding mitochondrial replacement techniques. They said, "It's more messy than we thought" and they raise the point that evidence suggests that mitochondria "play a key role in some of the most important features of human life."
My question is why the UK government is so eager to redefine "genetic modification" to exclude mtDNA changes when research into the effects of mtDNA is just now telling us that these 37 genes may affect more than previously thought. Replacing a person's mtDNA may affect their personality, which means giving them the traits of three people. This is not just a "battery replacement."
Add in that there are very few primate studies done so far and this is a germ-line modification that will affect generations, at the very least, caution would seem to be in order here, but there is none to be found.
If we can just redefine terms like "genetic modification" on false premises to fit an agenda, then I am certain that "designer babies" with all kinds of genetic tinkering are not far behind. Single base change on chromosome 12? Not "genetic modification." Remove a tiny part of chromosome 1? Not "genetic modification." Extra chromosome? Not "genetic modification."
By all means, redefine away so that we can create genetically-modified children to our hearts' content.
Monday, October 20. 2014
It is against the law in the United Kingdom to genetically engineer humans in a way that can be passed onto future generations. This is called a germ-line genetic modification. The three-parent embryo technique, also called mitochondrial replacement is very much a germ-line modification. When the majority of the people in the UK told the government they did not want the law changed, the government simply changed the definition of "genetic modification" so the technique could move forward. I think the UK Department of Health needs to change its name to the Ministry of Truth.
Read my piece about The Orwellian Deception: Three-Parent Babies Okayed in the U.K. at the National Catholic Register. It begins:
New cutting-edge techniques in biotechnology frequently evoke intuitive feelings of apprehension and unease. This is especially true for research that creates, manipulates or destroys human life.Continue Reading at the National Catholic Register >>
Tuesday, October 7. 2014
Many people are not aware that there are already about two dozen kids in the United States that have been genetically modified. A recent headline exclaims that "The World’s First Genetically Modified Babies Will Graduate High School This Year." This is true.
Nearly 2 decades ago, Dr. Jacques Cohen of the Institute for Reproductive Medicine and Science of St Barnabas in New Jersey genetically altered the eggs of infertile women and created around 30 genetically-modified children. Cohen used a technique called "cytoplasmic transfer" to "rejuvenate" an infertile woman's eggs by injecting the cytoplasm of another woman's healthy egg. Factors inside the cytoplasm help the infertile woman's egg in fertilization.
When Cohen injected the cytoplasm of the healthy egg, it contained mitochondria from the donor egg. Those mitochondria have DNA from the woman who donated that egg called mtDNA. So the after that hybrid egg was fertilized, the resulting children had the DNA from 1 man, and 2 women. A genetic modification that any girl would pass onto her offspring since mitochondria are inherited from the mother only.
In 2002, the Washington Monthly did an in depth story on "cytoplasmic transfer" and Dr. Cohen where it was reported that the Food and Drug Administration (FDA) ordered Cohen and other fertility clinics to stop performing cytoplasmic transfer.
That seemed to be the end of creating children with three-genetic parents until "mitochondrial replacement" also called the "three-parent embryo" technique, came along recently as a way to "prevent" the inheritance of mitochondrial disease caused by mutations in the mtDNA.
Mitochondrial replacement is a more invasive technique where instead of simply injecting cytoplasm into an egg to help with fertilization, the egg is taken apart. The nucleus of an egg with defective mitochondria is removed and placed into an egg with healthy mitochondria. That radically-altered egg is then fertilized. Like cytoplasmic transfer, this creates an embryo with the genetic material from three people.
Now that the United States and the United Kingdom are seriously considering moving forward with mitochondrial replacement, the children of cytoplasmic transfer are under scrutiny to see if they are healthy and normal. The New York Times did a glowing piece on 13 year-old Alana Saarinen, conceived with cytoplasmic transfer, that concludes:
Mrs. Saarinen, a hairdresser in suburban Detroit, believes the case for a new kind of fertility treatment is already clear. Her daughter Alana — athletic, smart and slim — has never been sick with anything worse than the flu.The message is clear, since Alana, at 13, is healthy then we are clear to move forward with mitochondrial replacement. By all means, let us begin to genetically modify our children, grandchildren and great-grand children because Alana is "athletic, smart and slim."
In all seriousness, there are several problems with this logic, or lack there of:
1. Alana, as sweet as I am sure she is, is an anecdote. We cannot base any decision about the safety of having three genetic parents on her smarts, her academic record, or her weight. What about the other children? The Washington Monthly story reveals that another cytoplasmic transfer child has been diagnosed with "pervasive developmental disorder."
2. Alana is only 13 and has yet to teach adulthood or have children of her own. A paper published in Science urged caution in moving forward with mitochondrial replacement because many effects of a mismatch between nuclear and mtDNA in animal studies are not observed until adulthood. We also have no idea how Alana's genetic engineering will affect her children.
3. Even if Alana and all the other cytoplasmic transfer children and their children are perfectly healthy for their entire lives, that says nothing about the future of mitochondrial replacement kids. The two techniques are fundamentally different. In cytoplasmic transfer, some extra cytoplasm is injected into the egg leaving it intact. In mitochondrial replacement, the egg is taken apart having a nucleus removed and then replaced, a much more invasive and destructive technique.
Mitochondrial replacement has more in common with cloning, where the nucleus of an egg is also removed and then replaced, then it does with cytoplasmic transfer. We all know about animal cloning horror stories including dogs that turned out greenish-yellow or were the wrong sex. Cloning trials in agricultural animals in New Zealand were halted because an unacceptable number of the cloned animals and their gestating mothers had to be euthanized.
The invasive nature of mitochondrial replacement is what caused Dr. Paul Knoepfler, stem cell researcher at UC Davis School of Medicine, to comment on Alana's story that this technique will "inevitably" create children with "chromosomal defects" and "developmental problems."
I am glad that Alana is so far happy and healthy, but she in no way proves that the children of mitochondrial replacement will be as well.
Tuesday, September 23. 2014
As someone who has handled DNA every day while at work in the lab, I can confidently say there is a lot we don't know about the information stored in this miraculous molecule or about how that information is used. This is one of the reasons why I have been very vocal against the three-parent embryo technique, also called mitochondrial replacement.
The DNA in our mitochondria, tiny organelles in the cytoplasm of our cells that produce usable energy, is very small. mtDNA only has 37 genes which is why many proponents of the three-parent embryo say that "switching out" the mitochondria in an egg (it is actually a switching out of the nucleus) is no big deal. Many have likened it to simply "replacing the batteries."
This kind of rationale drives me crazy because there is a complex symphony of communication between the mtDNA in the cytoplasm of the cell and the DNA inside the nucleus. Anyone who says differently may also try and sell you an island off the coast of Montana. A major concern with this technique is what will it mean for the children (and their children, and their children) with a mismatch between mitochondrial and nuclear DNA.
New Scientist has reconsidered their stance on the three-parent technique. Previously, they supported it saying that mtDNA makes "no contribution to the traits that make us human." Now they are not so sure because "It's more messy than we thought." I will let them explain:
Proponents argue the name is misleading: mitochondria and their genomes are purely functional, limited to producing energy and exerting no influence on appearance, personality, intelligence or other human attributes that we value.New Scientist calls for more debate before the UK moves forward with mitochondrial replacement. They unfortunately stop short of calling for a halt:
The new findings may not be a deal-breaker: the humanitarian benefits of mitochondrial replacement arguably outweigh the ethical concerns. Prospective parents may decide that they are happy to have a child with some traits from a third "parent".And this is where my head explodes. Can you spot the bias? Why is it only the parents' concerns that are valid? What about the child? Will THEY be happy to have traits from a third parent they will never know?
This comment is so typical of how we have gone off the rails as a society. All that is ever considered is what the parents' want; what will make them happy. Is there ever a thought to how this intentional genetic engineering will affect the child, and subsequently every generation after?
Apparently not at New Scientist. While I applaud them for stopping to consider the greater consequences, I think they have fallen short in their analysis of what is truly at stake.
At the very least, this shows that we have a woeful understanding of genetic mechanisms and that to even consider moving forward with the genetic manipulation of our offspring, even if the intention is a good, is grossly immoral.
Tuesday, August 5. 2014
**Now before anyone goes and reports that this a real cookbook, this is fiction people, fiction.** This author is either a visionary or he is totally crazy. The mention of self-cannibalism makes me lean toward crazy. From Dominic Skelton at the Times Live:
A year after the presentation of the world’s first lab-grown hamburger a strange conceptual cookbook for stem cell food has arrived on the scene.How horrific would that be? Eating a piece of meat with your DNA for dinner? I can see it now, "Hey honey, I go great with this Pinot Noir! Next time I will try myself a bit more rare." Yuck! Total yuck!
Maybe that is the author's intent. To get us to think about the nature of in vitro meat before we start mass producing it.
Thursday, July 24. 2014
Peter Paul Rubens was a Flemish painter that lived in the late 16th century. This is one of his famous paintings, The Three Graces, which I have seen at the Prado in Madrid.
Likely considered to be the ideal female form at the time, these women have creamy white skin with plenty of lumps and bumps. Look at those generous thighs, those round bellies!
Fast forward 500 years and this is now considered to be the ideal female figure. (I actually googled "ideal female body".)
Slim, tan, and not a lump or bump to be found anywhere.
Now I do not want to discuss which ideal is the best. I only want to point out that in less than 500 years the desired physique of a woman has changed drastically. Humans are slaves to fashion, and not just in our clothing, but in how we see our bodies as well.
Now think about germ-line genetic engineering, genetic engineering that will be passed down from generation to generation. Today's parents would likely choose height, strength, darker skin tone, and a fast metabolism for their child. But if they did engineer their children to have these genetic traits, they would also be choosing those traits for their grandchildren, their great grandchildren, their great-great grandchildren and so on.
In typical human style, styles will change. What is in fashion now will certainly not be in 50, let alone, 100 years. It is totally plausible that in 500 years, the ideal human will be short, fat and very, very white.
We cannot fathom that now. But therein lies the rub. Humans are short-sighted. Just as people in the 16th century could not have imagined our love for brown, toned bodies, we cannot begin to comprehend what future humans will find desirable.
So how can we, in good conscience, allow one generation to make such choices for every generation after? The answer is, we can't.
Friday, July 18. 2014
Warning! Spoilers Ahead!!
Divergent is the latest of the teen dystopian future trilogies to hit the big screen. I have read all three books, Divergent, Insurgent, and Allegiant. Is it not my favorite trilogy in this growing genre, but I know that teens everywhere love it.
I do appreciate that Veronica Roth has tackled some of the most difficult issues that will face the younger generation. The third book, Allegiant, takes human genetic engineering and genetic discrimination head on.
Here is a little background. The trilogy begins in a walled city where everyone lives in 5 factions depending on their personal qualities. The Amity are all about peace and friendship. The Candor are brutally honest. The Erudite are incredibly clever. The Dauntless are risk-takers devoid of fear. And the Abnegation are selfless and driven to serve others.
If a person does not fit in one of these boxes, they are called "divergent,", and being divergent is a dangerous prospect. The main character, Tris, is divergent. She spends the first novel trying to hide it and the second novel discovering she needs to get outside the city to see what lies beyond the walls.
In the third book, we learn why the city is set up the way it is. On the outside, Tris finds out the city is a genetic experiment to try and fix damage that was done generations ago. With typical arrogance and ignorance, human beings began to genetically alter themselves to be better. The genetic engineering was done in a germ-line fashion and had unforeseen side effects that generations later were still wreaking havoc. One character involved in running the experiment explains:
“But when the genetic manipulations began to take effect, the alterations had disastrous consequences. As it turns out, the attempt had resulted not in corrected genes, but in damaged ones,” David says. “Take away someone’s fear, or low intelligence, or dishonesty . . . and you take away their compassion. Take away someone’s aggression and you take away their motivation, or their ability to assert themselves. Take away their selfishness and you take away their sense of self-preservation. If you think about it, I’m sure you know exactly what I mean.”The genetically damaged were isolated in the city and placed in factions in an attempt at peaceful coexistence and a chance at fixing the results of the genetic engineering. We find out that being divergent, not wholly in one faction or another, is actually a sign of genetic healing.
But outside the city is not all peaches and cream either. Those who still live with "genetic damage" are second class citizens, seen as lesser humans, and they are unable to hold certain jobs. Those who were not genetically engineered are considered "genetically pure," and they run the place. It becomes clear that both the "damaged" and the "pure" are capable of great evil and great good regardless of their genetic make-up.
Roth address two important themes that today's teens need to be thinking about. The first is the wisdom of genetically altering ourselves to be "better." In Allegiant, we discover that the attempt goes horribly wrong and it affects generation after generation. Anyone reading this trilogy has to ask themselves if it is a road we should even begin to go down.
The second theme is one we are already grappling with: genetic discrimination. Are we defined by our genes "detective" or otherwise? Or are we more than a sequence of nucleotides? It seems clear to me that this trilogy answers "No" to the former and "Yes" to the latter.
Unfortunately there is a hint of some premarital sex in the last book, but I still want to thank Veronica Roth for tackling tough issues in biotechnology in a way young people love. I hope this trilogy gives them pause in a world that thinks science can solve any problem. I hope they see that being human is not a problem that needs to be fixed.
Tuesday, June 10. 2014
In today's modern society everything seems turned around. Black is white. White is black. You would think nothing would surprise me anymore, but it does, especially in the realm of reproductive medicine.
The United Kingdom's authority on reproductive medicine, the Human Fertilisation and Embryology Authority (HFEA), has called the creation of embryos with three genetic parents "not unsafe" in the attempt to move the procedure to the clinic. I have written extensively about the technique and its safety issues before.
The HFEA recommends more testing be done, but they don't recommend that testing be done in primates. That would be unethical. Jessica Cussins, in the Huffington Post, exposes the report that states that the HFEA thinks continuing with testing the procedure in primates raises ethical issues:
Although this review is focused on the science, it is an ethical concern to carry out experiments on animals, especially non-human primates, if these are likely to not be informative.But they do want to continue testing the procedure on human embryos. They need to see if a mixture of mitochondria from the donor woman and the woman with mitochondrial disease will cause a problem. Also they want to see if three-parent embryos have normal gene expression. Until researchers are satisfied, no doubt none of these experimental embryos will ever see the inside of a uterus.
So it is ethical to create and destroy human embryos for these studies, but not animal embryos. Cussins asks, "Does that imply that the decision makers are exercising less caution with humans?" I have no doubt that is the case.
Also it seems that the HFEA thinks that it is ethical to make children experiments in general since no embryo studies will ever prove the technique is safe for the long term. A fact they openly acknowledge:
"Until a healthy baby is born, we cannot say 100 percent that these techniques are safe," said Dr. Andy Greenfield, who chaired the expert panel behind the report.The child is the experiment and will be for his or her entire life since birth will not be the end of possible adverse outcomes. It will only be the beginning.
And what happens when a healthy child is not developing in the womb? I suspect abortion will be the damage control of choice. Like in so many other reproductive technologies, abortion will be the fail-safe. If something goes wrong, just get rid of the child and start over until you get that "healthy child." Without abortion we would never continue on with such experimentation for fear of having to face the consequences of what we have done to the children.
The HFEA also acknowledges the dangers of this type of genetic engineering. This three-parent technique is a germ-line modification, one that will be passed on to future generation. They admit that this procedure may put a girl in the very same position as her mother, faced with passing on a genetic condition:
The panel strongly recommends that permission is sought from the parents of the children born from MST or PNT to be followed up for an extensive period... any female born following MST or PNT should be advised, when old enough, that she may herself be at risk of having a child with a significant level of mutant mtDNA, putting her child, and if female, subsequent generations at risk of mitochondrial disease.The difference between mother and daughter, of course, will be that the daughter will know she was an experiment and whatever she passes on was done to her deliberately.
Going forward with the three-parent technique, even if it seems like a good idea, will cement the "try it first and worry about the consequences later" methodology of reproductive medicine where children are the experiment. This will open the door to more invasive modifications to chromosomes; modifications that will affect not only the first child, but every generation after.
The HFEA is willing to experiment on embryos and children and open the door to even more radical human genetic engineering for only about a dozen women a year that could benefit from such a technique.
I ask, what happened to curing and treating disease? How about focusing on treatments for mitochondrial disease instead of embarking on unethical human experimentation and opening a Pandora's box of human genetic engineering?
Wednesday, April 23. 2014
The 21st human chromosome is the smallest of all our chromosomes. It contains only a few hundred genes and is only 1% of our total DNA. As most people know, an extra chromosome 21 causes Down Syndrome. What most people did not know until research published this week, is that tiny chromosome has an effect across the whole human genome.
Instead of simply being an extra copy of each of the genes on chromosome 21, trisomy 21 has an effect on the expression of genes on other chromosomes. The Scientist has the story of the fascinating research that lead to this discovery:
The deleterious effects of trisomy 21—the extra chromosome behind Down’s syndrome—can be seen across the entire genome, according to a study published today (April 16) in Nature. While studying a pair of monozygotic twins in which only one person had Down’s syndrome, a team led by Stylianos Antonarakis of the University of Geneva Medical School in Switzerland discovered that trisomy 21 can affect other chromosomes.Understanding how the extra genetic material in those with Down Syndrome affects the rest of the DNA in the cell is a critical step toward effective gene therapy, so this is a major breakthrough.
What this discovery also reinforces what we are beginning to understand: genetics and gene expression is a lot more complex than just a sequence of DNA. There is a symphony of influences that affect how genes are expressed and even a tiny piece of DNA can alter the music. This quote really stood out to me:
“The mere addition of a small piece of DNA—about 30 megabases, or 1 percent of the genome—can disturb the entire transcriptome, all the genes of the genome. And not only disturb them, but disturb them in a specific and programmed way,” said AntonarakisIn other words, when it comes to genetics, small changes can have big effects.
Continue reading at Creative Minority Report>>
Monday, March 10. 2014
In the November 2012 elections, voters of Washington state had to decide on Initiative 522. I-522 would require food sold in the state to be labeled if any of its components were produced by genetically modified organisms (GMOs).
Proponents made a necessary distinction between selectively bred plants and animals and those that are GMOs. Selective breeding has been standard practice in agriculture since man began herding animals and growing crops. GMO plants and animals are those that have a genetic makeup that would not occur naturally through normal breeding. For example, a plant that has had a gene inserted that gives it resistance to weed killer and a cow that has been cloned so it is immune to mad-cow disease are GMOs.
It was a contentious battle, with supporters of I-522 telling consumers that genetic engineering has unintended consequences and that ingesting GMO products may make us sick. Proponents insisted that we have a right to know what is in our food.
Ads against I-522 did not suggest food made from GMOs was perfectly safe or that the concerns of food purists were unfounded. The opposition focused on the wording of the initiative and on the impact labeling would have on the price of food.
I-522 was defeated with 45% of voters supporting the initiative and 55% opposed. A similar initiative in California, Proposition 37, also did not pass. In 2012, California voters were 49% in support of labeling food made from GMOs; 51% voted against Prop. 37.
Analyzing these votes, it is apparent that nearly half of the voting residents in California and Washington are concerned about eating GMOs and want to be informed about which foods contain GMO products. A poll conducted by ABC News found that 65% of Americans either believe GMOs are unsafe to eat or are unsure about their safety, and 93% of those polled believe that the government should require labeling.
At the same time, in another West Coast state, genetically modified human embryos are being made with little objection from the general public.
Continue reading at the National Catholic Register >>
Sunday, February 16. 2014
On February 25th and 26th, the Food and Drug Administration (FDA) will be having a meeting to discuss allowing the technique that creates embryos with three genetic parents to proceed to clinical trials. The "three-parent" embryo technique is also called mitochondrial replacement, maternal spindle transfer, or oocyte modification.
In an effort to "treat" mitochondrial disease, this technique would intentionally modify IVF embryos to have the genetic material from three persons. This modification is also one that will extend beyond the children produced and will be passed onto future generations. (For more information about "three-parent" embryos read my article at the National Catholic Register.)
Over 40 countries have banned such inheritable genetic modifications. Regrettably, the United States has no such laws and it is up the FDA to regulate the practice. They are currently taking written opinions on the subject, but only until this Tuesday, February 18th. The FDA needs to hear from the public on this issue.
This is a pivotal point in human history. Will we allow the intentional genetic modification of our children and grandchildren? I do not believe I am exaggerating when I say the future of our species depends on how we answer that question.
Please tell the FDA what you think. The contact information given on the advisory panel web page is Gail Dapolito, Fax 301-827-0294, e-mail: gail.dapolito[at]fda.hhs.gov or Rosanna Harvey, Fax 301-827-0294, e-mail: rosanna.harve[at]fda.hhs.gov
Here is the letter I wrote to the committee. Please feel free to use any or all of it.
FDA Cellular, Tissue and Gene Therapies Advisory Committee:Alternatively, the Center for Genetics and Society has a letter you can sign. They suggest embryo screening as a "safer" alternative which pro-lifers cannot agree with, but overall the content of the letter is excellent. The Center for Genetics and Society is a progressive organization. It is important that the FDA hear from all points on the political spectrum. This is one issue that both the left and right can agree on.
Friday, October 25. 2013
To stop the latest of the Brave New World movements, we need a cacophony of resistance. Luckily, it is not just pro-lifers that are sounding the alarm about three-parent IVF, also called mitochondrial replacement (MR).
People from all sides are voicing their concerns about the ethics and safety of this technique where a donor egg's nucleus is removed and replaced with the nucleus of a woman with mitochondrial disease. That genetically-engineered egg is then fertilized with sperm creating an embryo that has genetic material from three persons, the mitochondrial DNA (mtDNA) from the donor, and nuclear DNA contributed by the parents.
And while it sounds like a nice thing to be able to help women who have mitochondrial disease to have healthy children (a woman with a mutation in her mtDNA cannot help but pass on that mutation because we inherit our mitochondria from our mother), there is a laundry list of ethical issues that finally seem to be gaining traction.
Jessica Cussins, an IVF-conceived adult, pretty much hits them all in her piece at the Huffington Post.
There is the fact that there is a shocking lack of animal studies which means that no one really knows that this is safe, and yet many are willing to move forward with this blatant experimentation on the next generation.
There is also the fact that this is a germ-line genetic modification which means it will be passed on to further generations. I will add that the only way to prevent that would be to toss out all the female embryos and transfer only males since they could not pass on their mitochondria. This has been suggested already.
Finally, Cussins points out something I have yet to cover: the fact that mitochondrial replacement has more in common with SCNT, better known as cloning, than it does IVF. In both cloning and MR, the nucleus of a donor egg is removed and replaced with another. In cloning, the egg is made to think it has been fertilized. In MR, the egg is fertilized.
We know that SCNT in animals has had some serious problems. Cloning trials in agricultural animals in New Zealand were halted because an unacceptable number of the cloned animals and their gestating mothers had to be euthanized.
So, I just can't agree with the recent article in The Scientist, which compared the unease around mitochondrial replacement techniques to the initial unease surrounding traditional IVF. I'm glad that people were concerned about the welfare of us IVF kids, but mitochondrial replacement (which is much closer technically to reproductive cloning than it is to traditional IVF) is exponentially more problematic.On a certain level, she is right. This is not just another reproductive technology. We are on a threshold. Will we move forward in genetically-engineering our children, forever changing the course of humanity? Cussins points out the importance:
There are larger social and ethical considerations that mitochondrial replacement also forces us to confront. Most importantly, this technology raises one of the thorniest questions humanity will ever face: are we willing to genetically modify future generations of humans?Cussins last thoughts hint at the same suggestion that I have made. Instead of engineering people to not have mitochondrial disease, how about we focus on cures and treatments for mitochondrial disease, not just for future generations, but for people who are living with it right now:
I hope that this discussion will also raise awareness and improve access to healthcare for the people who are already alive and struggling with mitochondrial diseases today.Of course we Catholics reject IVF in all its forms and we understand that the three-parent IVF is just a logical progression of making life outside the body. But, we have allies in this fight against the creation of genetically-engineered children in those who may disagree with our views on reproductive technologies. I am certain it will take all our voices together to halt this bullet train.
Monday, October 14. 2013
This year scientists announced a major breakthrough and a possible gene therapy for Down Syndrome. In cells taken from a person with Downs, they were able to silence the extra 21st chromosome. This may mean a targeted therapy to help fix the health and cognitive problems caused by have that extra bit of genetic material.
Reactions were mixed. Some thought that people with Down Syndrome are perfect as God made them and we should do nothing to change them. I understand this reaction very well. We live in a society that kills 90% of people with Down Syndrome before they make it out of the womb. It is entirely natural to want to protect those with Downs because they are wonderfully lovely people that, frankly, the world needs more of, not less.
I saw this breakthrough a bit differently. I found the news exciting and full of hope. I too believe that God made those with Down Syndrome as perfect people, but they are not defined by their chromosomes. They do have an extra that causes all kinds of problems from cognitive difficulty, to heart defects, to cancer. I feel it is important to treat these issues. We would not hesitate to treat cystic fibrosis or Huntington's disease or even autism if there was gene therapy available.
That being said, I find it hard to comment on these very important discussion because I do not have a special needs child. I look to other parents of special needs kids to help guide me. This piece, Down Syndrome Research, Hope for My Daughter, by Leticia Velasquez at Amy Julie Becker's Thin Places blog is so fantastic I had to share it with you. Leticia is the author of the blog Cause of Our Joy, co-founder of KIDS (Keep Infants with Down Syndrome), and the editor of A Special Mother is Born. She also has a daughter, Christina, with Down Syndrome who has regressed over the years. Christina no longer speaks. Leticia hopes this breakthrough will help bring her daughter back:
My daughter is trapped by Down syndrome’s confused messaging in her brain. Do I love her as she is, even if she never speaks again? Of course I do! Do I want her to speak with all my heart so that she can find more happiness in the world, in friendships, reading, and fulfilling work?Beautiful. I share Leticia's hope that someday all people with Down Syndrome can live the fullest lives possible. I think gene therapy may be a step in that direction.
Tuesday, September 24. 2013
In the last year there has been a push in both the United Kingdom and the United States for permission to create children with three genetic parents. This technique, often called mitochondrial replacement (MR), is presented as a simple switching out the mitochondria in the eggs of women with mitochondrial disease. We inherit all of our mitochondria from our mother, so a woman with mitochondrial disease cannot help but pass that onto her offspring.
In reality, the technique is far from simple. The nucleus of a donor egg is removed and replaced with the nucleus of the woman with mitochrondrial disease. This creates a genetically-engineered egg where the mitochondrial DNA (mtDNA) in the cytoplasm of the egg is from the donor and the nuclear DNA, the chromosomes we all learned about in biology, is from the woman with the mitochondrial disease.
The embryos created with IVF using these genetically-engineered eggs have the nuclear DNA of a woman and a man, like all other embryos, but would also have the mitochondrial DNA of the woman who donated the egg. These children would have the genetic material from three individuals.
In addition, these genetically-engineered children, well at least the girls, could not help but pass this engineering onto their offspring. This is a modification that would affect generations.
In the UK, the Nuffield Council on Bioethics, the Medical Research Council and the Wellcome Trust all came out in favor of pursuing the technique saying that because the chromosomes were unaltered, mitochondrial replacement was analogous to "replacing batteries in a camera" and would have no effect on other traits in the children.
Also, there are suggestions that sex selection be used in conjunction with MR. If all the female embryos are tossed out and only male three-parent embryos are transferred to the womb, then the modification will not be passed on to further generations because only women pass on their mitochondria. This is would be a fail-safe in case some defective mitochondria hitch a ride with the nucleus into the donor egg or something else goes wrong.
During all of this debate, I have wondered where is all the data to suggest that this technique is safe. There is a delicate balance of signals between mtDNA and nuclear DNA. Where is the evidence that replacing mtDNA has no ill effect? How can we even be discussing moving forward with this kind of human genetic engineering unless it has been shown to be safe in generations of animal studies? Where are those studies?
A recent paper in Science exposes the reality that there is little data on this technique and the data we do have suggests that MR is not just like "replacing batteries."
So far the only primates created with this technique are four macaques that have only reached 3 years of age. Other animal models show that in males, a mtDNA-nuclear DNA mismatch has some serious effects that may not be apparent until adulthood:
Studies on model organisms, ranging from mice to fruit flies, indicate that MR can profoundly change the expression profiles of nuclear genes and affect a range of important traits such as individual development, cognitive behavior, and key health parameters. These studies also suggest that males of reproductive age are particularly sensitive to MR-induced effects....So here is the reality: many are willing to move forward with this technique in humans when 1. there are no primates created with this technique that have reached adulthood or even had another generation and 2. it is clear that mtDNA does have an affect on the nuclear DNA and a mismatch between the two could have serious effects that may not be apparent until later in life.
This would be pure human experimentation with little or no regard for the people who are being experimented on.
So I ask: When will it be enough?
At what point will we stand and say, "No more unethical experimentation on the next generation!"
When will we turn to parents and say, "Sorry but your desire for a child does not trump the health and safety of that child."
When will we turn to academics in their Ivory Towers and ask them why they have such little regard for the health and well-being of future children?
I would say now is a good time.
Thursday, July 18. 2013
Amazing news was announced in the field of gene therapy this week. Scientists in Massachusetts have taken the cells of a person with Down Syndrome and have silenced the extra 21st chromosome in those cells. The Guardian has the story:
Scientists have corrected the genetic fault that causes Down's syndrome – albeit in isolated cells – raising the prospect of a radical therapy for the disorder.The scientists used a gene normally found on the X chromosome to shut down the extra chromosome. Men have one X chromosome in their cells, and women have two. Only one X chromosome is needed for a cell to function, so the Xist gene inactivates one of the X chromosomes by covering it in RNA. Researchers were able to insert the Xist gene in the chromosome 21, which then silenced it.
This breakthrough could also be applied to other disorders like Edward syndrome which is trisomy 18, and Patau syndrome which is trisomy 13.
Researchers were very clear that any treatment from this technique maybe a decade or more away if at all. Anytime you insert DNA into the genome it is dangerous and safety needs to be the foremost concern.
That being said this is excellent news. This technique could possibly be targeted to cells in the body where an extra chromosome 21 causes problems. People with Down Syndrome can suffer from physical problems like gastrointestinal issues and blood cancers. Scientists envision using this technique, for example, in the bone marrow to prevent leukemia.
Of course this begs the question: Could such a technique be used early enough in development to turn off the extra chromosome in all the cells of the body? In theory, yes. If the modification was done in the embryo, then the modification may be incorporated into every cell during development. But that would require creating and manipulating life in a laboratory which we cannot support.
I know there are many who worry that breakthroughs like this imply that their beloved child with Down Syndrome needs "fixing" and that it is not good enough to love them they way they are. I am not a parent of a special needs child so it is incredibly difficult for me to comment on these very valid concerns. Making genetics my profession, I have always thought a person is more than just a sum of their genes. So for me, a person with Down Syndrome is so much more than their extra chromosome 21. The syndrome is not who they are. It does not define them. And so therefore I have never personally perceived treating the cognitive and physical issues associated with Downs as a rejection of their person.
I also do not believe that a person with Down Syndrome needs to be "fixed." But I could certainly see how such measures could be perceived as such. At the same time, we do not see treating other genetic disease like cystic fibrosis with gene therapy as "fixing" the person, but instead as "fixing" the disease. I think the same applies here. Gene therapy that allows children to live a healthy life is not a rejection of who they are.
And yet, every time I read about another such breakthrough in gene therapy, it is always bittersweet for me. After the initial hope there is despair. Despair for those who are denied the possibility of such a treatment because they were killed in the womb.
That is the problem with using abortion to "treat" genetic disease: it is the fallacious assumption no treatment will ever be developed or that no cure will ever be found. Instead of putting faith in the advancement of medicine, we instead deny children the promise of cutting-edge research by terminating their lives before they make it out of the womb. Death is never a real medical treatment. In death there is no hope.
So while this news is exciting and I pray that in the future it will improve the health of those with Down Syndrome, I also mourn for those who have been denied its promise.
Wednesday, April 10. 2013
I read somewhere that while both George Orwell's 1984 and Aldous Huxley's Brave New World contained dystopian futures, Huxley's world, where humans are made in "hatcheries" and the people were kept compliant, not by the threat of Big Brother, but by the numbing of their senses with the pleasure-inducing drug "soma," was a more plausible scenario.
After reading "In vitro eugenics" by Dr. Robert Sparrow in the Journal of Medical Ethics, I have to agree. Dr. Sparrow explores the possibility of creating embryos in the lab, then using the stem cells from those embryos to create egg and sperm cells, and then using those gametes to create more embryos. Essentially, this would take human reproduction into the laboratory not just for one generation, but for generation after generation. These embryos would be "orphaned at conception." They "would have no genetic parents: there would be no living individual—or indeed individual that had ever lived—who could be described as the genetic progenitor of such embryos." Sparrow calls this "in vitro eugenics."
Continue reading at Creative Minority Report >>
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