Illustration of a human embryo. (iStock)
Scientists have successfully edited the DNA of human embryos to erase a heritable heart condition that is known for causing sudden death in young competitive athletes, cracking open the doors to a controversial new era in medicine.
This is the first time gene editing on human embryos has been conducted in the United States. Researchers said in interviews this week that they consider their work very basic. The embryos were allowed to grow for only a few days, and there was never any intention to implant them to create a pregnancy. But they also acknowledged that they will continue to move forward with the science, with the ultimate goal of being able to “correct” disease-causing genes in embryos that will develop into babies.
News of the remarkable experiment began to circulate last week, but details became public Wednesday with a paper in the journal Nature.
The experiment is the latest example of how the laboratory tool known as CRISPR (or Clustered Regularly Interspaced Short Palindromic Repeats), a type of “molecular scissors,” is pushing the boundaries of our ability to manipulate life, and it has been received with both excitement and horror.
The most recent work is particularly sensitive because it involves changes to the germ line — that is, genes that could be passed on to future generations. The United States forbids the use of federal funds for embryo research, and the Food and Drug Administration is prohibited from considering any clinical trials involving genetic modifications that can be inherited. A report from the National Academies of Sciences, Engineering and Medicine in February urged caution in applying CRISPR to human germ-line editing but laid out conditions by which research should continue. The new study abides by those recommendations.
This animation depicts the CRISPR-Cas9 method for genome editing – a powerful new technology with many applications in biomedical research, including the potential to treat human genetic disease or provide cosmetic enhancements. (Feng Zhang/McGovern Institute for Brain Research/MIT)
Shoukhrat Mitalipov, one of the lead authors of the paper and a researcher at Oregon Health & Science University, said that he is conscious of the need for a larger ethical and legal discussion about genetic modification of humans but that his team's work is justified because it involves “correcting” genes rather than changing them.
“Really we didn’t edit anything. Neither did we modify anything,” Mitalipov said. “Our program is toward correcting mutant genes.”
Alta Charo, a bioethicist at the University of Wisconsin at Madison who is co-chair of the National Academies committee that looked at gene editing, said that concerns about the work that have been circulating in recent days are overblown.
“What this represents is a fascinating, important and rather impressive incremental step toward learning how to edit embryos safely and precisely,” she said. However, “no matter what anybody says, this is not the dawn of the era of the designer baby.” She said that characteristics that some parents might desire, such as intelligence and athleticism, are influenced by multiple genes and that researchers don't understand all the components of how such characteristics are inherited, much less have the ability to redesign them.
The research involved eggs from 12 healthy female donors and sperm from a male volunteer who carries the MYBPC3 gene, which causes hypertrophic cardiomyopathy. HCM is a disease that causes an abnormal thickening of the heart muscle but can cause no symptoms and remain undetected until it causes sudden cardiac death. There's no way to prevent or cure it, and it affects 1 in 500 people worldwide.
Around the time the sperm was injected into the eggs, researchers snipped out the gene that causes the disease. The result was far more successful than the researchers expected: As the embryo's cells began to divide and multiply, a huge number appeared to be repairing themselves by using the normal, non-mutated copy of the gene from the women's genetic material. In all, they saw that about 72 percent were corrected, a very high number. Researchers also noticed that there didn't seem to be any “off-target” changes in the DNA, which has been a major safety concern of gene-editing research.
Mitalipov said he hoped the technique could one day be applied to a wide variety of genetic diseases and that one of the team's next targets may be the BRCA gene mutation, which is associated with breast cancer.
The first published work involving human embryos, reported in 2015, was done in China and targeted a gene that leads to the blood disorder beta thalassemia. But those embryos were abnormal and nonviable, and there were far fewer than the number used in the U.S. study.
Juan Carlos Izpisua Belmonte, a researcher at the Salk Institute who is also a co-author on the new study, said that there are many advantages to treating an embryo rather than a child or an adult. When dealing with an embryo in its earliest stages, only a few cells are involved, while in a more mature human being there are trillions of cells in the body and potentially millions that must be corrected to eradicate traces of a disease.
Izpisua Belmonte said that even if the technology is perfected, it could deal with only a small subset of human diseases.
“I don’t want to be negative with our own discoveries, but it is important to inform the public of what this means,” he said. “In my opinion the percentage of people that would benefit from this at the current way the world is rather small.” For the process to make a difference, the child would have to be born through in vitro fertilization or IVF and the parents would have to know the child has the gene for a disease to get it changed. But the vast majority of children are conceived the natural way, and this correction technology would not work in utero.
For years, some policymakers, historians and scientists have been calling for a voluntary moratorium on the modification of the DNA of human reproductive cells. The most prominent expression of concern came in the form of a 2015 letter signed by CRISPR co-inventor Jennifer Doudna, Nobel Laureate David Baltimore and 16 other prominent scientists. They warned that eliminating a genetic disease could have unintended consequences — on human genetics, society and even the environment — far into the future.
On Wednesday, Marcy Darnovsky, executive director of the Center for Genetics and Society, warned that the O.H.S.U. research would result in fertility clinics offering “ ‘genetic upgrades’ to those able to afford them.”
“Once those commercial dynamics kick in, we could all too easily find ourselves in a world where some people’s children are considered biologically superior to the rest of us,” she said in a statement. “We need to ask ourselves whether we want to add that new kind of excuse for extreme social disparities to the ones we already tolerate.”
Researchers who worked on the heart-condition experiment appear to have differing views on where their work is headed.
Paula Amato, a reproductive endocrinologist with O.H.S.U., was excited about the idea of being able to edit out diseases before birth. She said that while pre-implantation genetic screening of embryos is now available, it isn't perfect. She talked about how one of her patients went through three cycles of in vitro fertilization but all the eggs that were harvested had the gene mutation that causes diseases.
With gene correction technology, Amato said, “we could have rescued some of those embryos.”
But Izpisua Belmonte said he is focusing on using the findings from this study to further research into gene modifications during a pregnancy or after birth into adulthood.
“I feel that the practical thing to do is deal with the diseases people have, not with the disease they may have,” he said.
Mitalipov said he hopes regulators will provide more guidance on what should or should not be allowed.
Otherwise, he said, “this technology will be shifted to unregulated areas, which shouldn’t be happening.”
This story has been updated.
A new CRISPR breakthrough could lead to simpler, cheaper disease diagnosis
Scientists debate the ethics of CRISPR
Ethicists urge caution in applying CRISPR to humans
Jennifer Doudna ponders 'what it means to be human' on the frontier of gene editing
My interest in designer babies was first sparked by a book I was required to read in high school, Brave New World. For my class I was required to do a little research on this book, and as I was searching the Internet I came across a website on designer babies. Although Brave New World is not a book about designer babies, the altering of human genes described in the book is a concept very similar to designer babies. The possibility of a society made up of genetically altered humans, such as the one in this book, is becoming very real with the help of advancements in technology. In vision one day you and your significant other are going to the doctor because you are planning to have a baby, but you are not going to the doctor for a check up. You are going to pick out the sex, characteristic traits, and physical features (eye color, hair color skin color, etc.) of your baby. Crazy right? To think, one day we will have the technology and resources to do this. Although this topic of “designing your baby” is fairly new and the science has not been perfected, it is a very big possibility in our near future. The issue with this technology is whether it should be allowed or not. Parents always want the very best for their children, but my morals lead me to believe that parents should not be allowed to alter their children in this way. In this exploratory essay I hope to find solid and specific information to help me decide my stance on this question: Should parents be allowed to design what their children look like?
In English 2000 we were introduced to online search engines that could be used to find information on our topics. The search engine I found the most handy was the EBCO Host website. This site lead me to many resourceful articles that truly helped me better understand the topic of designer babies. The first resource I came across is titled Designer Babies: Eugenics Repackaged or Consumer Options? By Stephen L. Baird, technology education teacher at Bayside Middle School, Virginia Beach, Virginia. Baird describes how journalists are the ones who have coined the term “Designer Babies”. He goes onto to explain that this term is simply a shortened phrase that represents certain reproductive technologies that allow expecting parents to have more control on the birth outcomes of their child (15).
Read Also: Exploratory Essay Topics
In vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) are two procedures of genetic engineering that are described through specific cases throughout this document. “Almost three decades ago, on July 25, 1978, Louise Brown, the first “test-tube baby” was born. The world’s first “test-tube” baby arrived amid a storm of protest and hand-wringing about science gone amok, human animal hybrids, and the rebirth of eugenics” (Baird 12). This “test-tube” case is the first case explained by Baird. The purpose for this example case is to describe how using the in vitro fertilization reproductive technique is not necessarily a bad thing. Although many voices of the public spoke against Brown, the “test-tube” baby, she was born as a completely normal human child.
This is just one of the multiple cases that show the views and opinions of the public. Baird captures the various arguments against designer babies and arguments for designer babies. Some people share the opinion that there is nothing wrong with designer babies because they assist in preventing particular genetic diseases and reduce the emotional and financial burden for parents of children with these altered genetic diseases (Baird 15). On the other hand, certain people feel strongly against designer babies because creating “perfect” children could evolve into changes in the physical appearance of the children before they are even born (Baird 15).
Baird’s document on designer babies was very informative in a way that helped me better understand the different sides of the argument on designer babies. I also felt as if this source gave me a better understanding on the basics of this topic such as the medical terms and procedures. Baird’s work could be very enlightening for individuals who do not have a complete understanding of what it means to be a designer baby. For example, before reading this I simply assumed designer babies were meant for physical alterations, and did not consider it to be beneficial to health alterations such as preventing genetic diseases. This paper did not hinder me to be for or against designer babies because I received equal information on both sides of the issue.
My second source, Designing Babies: What the Future Holds, came from the same search engine as the previous article. This article was written by Dr. Yury Verlinsky, graduate, postgraduate and PhD of Kharkov University. Verlinsky goes into detail about the different meanings the public has of designer babies. His definitions of designer babies include the sex of a child being chosen, testing embryos for unwanted disorders and diseases, or for cosmetic reasons (24). Verlinsky goes through the multiple views on the advantages and disadvantages of allowing parents to use the technology to create designer babies. One particular advantage of designer babies, pointed out by Verlinsky, that caught my attention was, “insurance companies, for example, may refuse to cover newborn malformations that could have been corrected before implantation” (25). This goes to show how people may be economically pressured into the technologies of designer babies. I found that this particular article had a lot of the same factual information as the previous article. Certain ideas from the two articles stuck out in similar ways. Even some of the same phrases were repeated in both articles that I have come across. Although there were similarities, this article also brought some new ideas to my attention. The first article contained many real life cases while this article used many hypothetical possibilities. Some of the hypothetical possibilities were a little out of the box, but they really got me to think about the circumstances that the designer baby technology could lead to.
Finally my third source, also coming from the same search engine, is A Brave New World of Designer Babies By Sonia Suter. This particular article goes in depth about the similarities and differences of the eugenics and neoeugenics movements. As stated by Suter, the eugenics movement can be explained as “the mission to reduce disease in the population, the efforts to protect the public fisc, and the goal of reducing suffering. What makes “eugenics” such a complex term is that its practitioners were well intentioned and it meant different things to different people” (900). Suter also explains the meaning of neoeugenics, “Neoeugenics strives towards “good birth” at the individual, rather than state level” (900). When Suter says at the individual level, he is referring to the fact that designing babies is an individual procedure that is a voluntary choice of the parent. In Suter’s mission to analyze the meaning of neoeugenics he brings us as far back to the times of eugenics brought about by Hitler.
Hitler was responsible for a mass genocide of individuals that did not fit his mold of the perfect human. In a way this is similar to the purpose of using gene alterations to make your designer baby. Suter describes how the main difference between eugenics and neoeugenics is the severity of the two (948). Suter states “neoeugenics appears less threatening than eugenics” (948). In the world we live in today we always want what is best for our offspring and ourselves. Suter explains, that those who disagree with designer babies could very possibly fall under the pressures of taking part in these sciences because they do not want their own children to be disadvantaged to the ones that chose to use these technological advances (965).
I found that my final article gave me the most information about the perspectives people have on designer babies. Since the study of designer babies is fairly new, I like how this document uses something from the past to help me relate it to something. This article really went in depth about the positives and negatives of designer babies. Some people are certain that using designer baby technology can help prevent diseases, while others are absolutely opposed to it. These articles have tremendously improved my understanding of designer babies. I was not aware of how truly in depth this term goes. As of now, I would not say I have a solid stance on the question I proposed at the beginning of my essay; should parents be allowed to design their babies? There are just so many different things that this term means and many different sides of the argument. I do not believe that this is a straightforward yes or no question. This is a complex issue that I need to do more research on. At this point, I do not think there is a problem with parents wanting to protect their children and prevent diseases their child is susceptible to in the future, but to physically and characteristically alter a child based on how you want your child to look and act is something I still feel is not something humans should be able to control.
Baird, Stephen L. “Designer Babies: Eugenics Repackaged Or Consumer Options? (Cover Story).” Technology Teacher 66.7 (2007): 12-16. Academic Search Complete. Web. 4 Feb. 2014.
Damiano, Laura. “When Parents Can Choose To Have The ‘Perfect’ Child: Why Fertility Clinics Should Be Required To Report Preimplantation Genetic Diagnosis Data.” Family Court Review 49.4 (2011): 846-859. Academic Search Complete. Web. 6 Feb. 2014.
Schenker, Joseph G. Ethical Dilemmas In Assisted Reproductive Technologies. Berlin: De Gruyter, 2011. eBook Collection (EBSCOhost). Web. 6 Feb. 2014. Suter, Sonia M. “A Brave New World Of Designer Babies?.” Berkeley Technology Law Journal 22.2 (2007): 897-969. Academic Search Complete. Web. 4 Feb. 2014
Verlinsky, Yury. “Designing Babies: What The Future Holds.” Reproductive Biomedicine Online (Reproductive Healthcare Limited) 10.(2005): 24-26. Academic Search Complete. Web. 6 Feb. 2014.