How much does it cost to genetically modify your child

Designer babies aren’t futuristic. They’re already here.

Biotechnology

Are we designing inequality into our genes?

Laura Hercherarchive page

October 22, 2018

Illustration of a fetus between the profiles of a man and a woman. The umbilical cord is forming a dollar sign.Benedikt Luft

At first, Matthew assumed the weakness in his knee was the sort of orthopedic nuisance that happens when you turn 30. It was weeks before he consulted a doctor, and months before it occurred to him that there could be a connection between his worsening limp and a cousin’s shoulder problem when they were kids. DNA testing confirmed it: Matthew, like his cousin, had a genetic form of dystonia, a condition where muscles contract uncontrollably. Their grandfather most likely had dystonia as well.

I’d met Matthew only a few months earlier, when he’d married my friend’s daughter, Olivia, in one of those hip old New York hotels with an elegant downtown vibe. Since I was the only genetic counselor of their acquaintance, they brought their questions to me. With their permission, I am sharing their story. I have changed their names to preserve their privacy.

Matthew was lucky. His was a mild version of DYT1 dystonia, and injections of Botox in his knee helped. But the genetic mutation can cause severe symptoms: contractures in joints or deformities in the spine. Many patients are put on psychoactive medications, and some require surgery for deep brain stimulation.

Their kids, Matthew and Olivia were told, might not be as lucky. They would have a 50–50 chance of inheriting the gene variant that causes dystonia and, if they did, a 30% chance of developing the disease. The risk of a severely affected child was fairly small, but not insignificant.

My friends learned there was an alternative. They could undergo in vitro fertilization and have their embryos genetically tested while still in a laboratory dish. Using a technology called pre-implantation genetic testing, they could pick the embryos that had not inherited the DYT1 mutation.

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.

We risk creating a society where some groups, because of culture or geography or poverty, bear a greater burden of genetic disease.

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.

Cost was not a concern for these couples, but it is an obstacle for many Americans. The Centers for Disease Control and Prevention (CDC) estimates that 1.7% of babies born in the US today are conceived using IVF. It’s much higher in countries that publicly fund assisted reproductive technology: 4% in Belgium, 5.9% in Denmark. A 2009 study found that 76% of the medical need for assisted reproduction in the US is unmet.

Insurance doesn’t normally cover IVF in the US, except for a handful of states where coverage is mandated. Even policies that cover fertility treatment are inconsistent in what they reimburse. Coverage for pre-implantation genetic testing is downright Kafkaesque. Under many policies, testing the embryos is covered, but the IVF procedure itself is not, because the couples are not infertile.

“The analogy I like to use,” says James Grifo, director of the Division of Reproductive Endocrinology and Infertility at NYU Langone Health, “is if you were having coronary bypass surgery and they didn’t pay for cracking the chest.”

At least part of the reason the IVF industry is growing is not that more people can afford it but that those who can are paying for new kinds of services. Egg banking, for example, is now aggressively marketed to younger women as an insurance policy against age-related infertility. In 2011, egg banking did not even exist as a category in the CDC’s annual report on IVF; by 2016, storing eggs or embryos was the purpose of 25% of all IVF cycles. Elite companies like Facebook offer egg freezing as a perk, but for most people it remains a luxury.

Cost isn’t the only barrier. Reproductive technology is less acceptable in racial, ethnic, and religious groups where being seen as infertile carries a stigma. Language barriers can reduce awareness and referrals. Geography also plays a role, since IVF clinics cluster in areas of greatest demand.

Presumably, many people would make the same decision as Matthew and Olivia if given the option, but many don’t have that choice. 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?

by Laura Hercher

The precision medicine issue

This story was part of our November/December 2018 issue.

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Last year, Verve Therapeutics started the first human trial of a CRISPR treatment that could benefit most people—a signal that gene editing may be ready to go mainstream.

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The Cost of Genetic Perfection

“What does it mean to be human? What does it mean to be human? I cannot help but suspect that at one time in the history of thinking that people believed that it meant that we were spiritual and that we could make choices and were capable of aspiring to higher ideals. Like maybe loyalty or maybe faith... Or maybe even love.

But now we are told by people who think they know, that we vary from amoeba only in the complexity of our makeup and not in what we essentially are. They would have us think as Dysart said that we are forever bound up in certain genetic reins- that we are merely products of the way things are and not free - not free to be the people who make them that way. They would have us see ourselves as products so that we could believe that we were something to be made - something to be used and then something to be disposed of. Used in their wars, used for their gains and then set aside when we get in their way.” Rich Mullins

You are ushered into a comfortable room with warm lighting. A well-dressed representative directs you to a chair and hands you a tablet. On the screen, you select the character traits, physical attributes, and even the personality of your child. Do you want a boy or a girl? What about its eye color? Height? IQ? Once all the available options and desired upgrades are selected, you are told that your child will be ready in nine months.

As far-fetched as this scenario may seem, science promises that the first completely made-to-order child is less than thirty years away. The philosophical implications of such a society are easy to recognize, but often ignored by those advocating for its arrival.

In vitro fertilization (IVF) is nothing new. Ever since Dr. Robert Edwards and Dr. Patrick Steptoe helped bring about the first successful birth of a baby conceived in a laboratory, IVF usage has grown in the United States and other western nations. In 2012, more than 61,000 IVF babies were born in the US. IVF promises couples unable to have children a chance of creating a baby together. Through the use of donor sperm and/or eggs, same-sex couples are also able to utilize IVF to start their families.

Though initially controversial, most of the controversy over IVF has dissipated as its usage has become more widespread. What has not received as much attention in the press, however, are the recent advancements in genetic research that promise a whole new frontier for and beyond IVF: genetically customized children.

The promise of genetic research is the ability to discover the tiny variations in our DNA that result in cancer, intelligence, height, and any of the countless attributes that make up a single individual. We already know what genetic markers to look for when determining whether a baby will be born with Down Syndrome or Tay-Sachs. Scientists promise that greater mapping of the human genome will lead us to the genetic markers of epilepsy, diabetes, and even specific talents.

It is only logical for these scientists to seek to apply that knowledge to the selection of children. While no clear consensus exists on the number of children aborted due to genetic screening, research indicates that as much as 90% of babies diagnosed with Down Syndrome are currently aborted. Genetic selection promises the ability to ensure that an embryo’s very DNA is engineered so that such an abnormality does not exist. No children with Down Syndrome will be aborted or born because no embryo will be created with Down Syndrome.

As Americans, we love the freedom to customize our lives. Chipotle, Five Guys and Cava are popular fast-casual food chains that thrive on the premise of countless customizable options to your meal. A visit to any car dealership now includes a myriad of customizable options. Genetic selection asks the question, “Why is it that, even with IVF, we make babies the way they were made for thousands of years?” After all, we are still uniting one sperm with one egg and waiting to see what genetic markers are created in the brand new DNA. How antiquated. How “anti-choice.”

Rather than chance, genetic selection will provide Americans with the ability to completely customize their child. Choice will finally triumph in the creation of life. A recent article published by Quartz argued that, “By the year 2040, embryo selection could replace sex as the way most of us make babies.” Why take the risk that the child you create could have an abnormality, when you could pay to ensure that all such conditions were erased from its DNA? Furthermore, why even go through the trouble of carrying a baby for nine months if you could grow it in the lab?

Last weekend, Scientists at Cambridge announced that they successfully kept an embryo alive in the laboratory for 14 days. Prior to this discovery, the longest an embryo had survived in the lab was 9 days. Due to ethics laws restricting embryonic experimentation after 14 days (the last day that an embryo could split and become a twin and thus the moment British law considers it an individual) the scientists killed the embryo. The scientists are calling for greater legal flexibility to experiment on embryos. Ultimately, children created and grown in a lab are no longer isolated to science fiction, but are entirely possible in the years to come.

What can easily be overlooked, however, are the philosophical implications of a customized, manufactured child and the effect such practice will have on society.

“It is a fetus until it is born, a person after birth” is one of the most common pro-choice definitions of personhood. What then is a child who is created and nurtured in a lab? At what point does its personhood begin? If personhood truly is tied to birth, than could such a child ever be a person?

While many can sympathize with the desire to isolate genetic markers for diseases, what about customizing children for other attributes? Already, women who fit the prevailing cultural definitions of “beauty,” “intelligence,” and “talent” are being paid more for their donated eggs than those who don’t meet those standards. We may not yet have found the genetic markers for these qualities, but many assume that a beautiful violinist who aced her LSAT has them. Thus, some couples are willing to pay more for her eggs.

Beyond the ethical implications of selecting a child because of its potential to fulfill our image of the “ideal,” there are widespread ramifications for society should this technology become legal.

If the majority of children are born in the lab, what will be the social status of those born through sex? Will insurance companies refuse to cover cancer treatments for children whose parents did not invest in customization? What will economic competition look like between two baby customization companies? Will we be offered “basic” models and then expensive genetic upgrades? “If you want a child who plays the violin and can run like Usain Bolt, that will be an extra $50,000.”

Most importantly, how will these companies treat their creations? If history is any guide, customized embryos or babies will be nothing more to a company than a number on their balance sheet.

Rather than the result of the loving, passionate embrace of a man and woman, or even the union of sperm and egg, such customized children will be genetically engineered products made by man, for the purpose of financial gain or personal gratification.

Some scientists estimate that as much as 80% of our traits are determined by genetics. Ironically, despite two generations of movies and books telling us that each child should be free to buck their parent’s ideals and choose their own destiny, genetic selection promises that no child will ever be able to—we will have written their DNA for them. For the few that are, society will likely marginalize them as genetically impure.

For a picture of such a society, look no further than Michael Bay’s The Island. In the film, science offers the ultra-wealthy the ability to clone themselves for the purposes of organ insurance. Clones are grown in nutrient rich laboratory sacs and then raised to believe that they live in a utopian world. Once a client is in need of a new heart, kidney, lung, etc, the clone is killed and its organs are harvested.

Viewers watch Dr. Bernard Merrick, an executive of the cloning corporation, callously refer to Tom Lincoln and Sarah Jordan, two clones, as, “products.” Lincoln and Jordan spend the last half of the film fighting for their lives as they seek to escape the company’s clutches. Watching the film, there is no doubt as to the personhood, humanity, and dignity of the clones callously sacrificed by Merrick in the name of profit. Reading the stories about the advancements in genetic selection and embryonic testing, it becomes clear that our society will have to grapple with these questions in more than just its movies.

Without a robust understanding of personhood and when it begins, we may all be on our way to the Island.

Is it possible to create genetically modified children?

December 3, 2018

Photo credit, Getty Images

Image caption,

Will scientists who have succeeded in gene therapy start creating genetically modified humans?

People have learned to create plants, animals and even our own genes. But so far, intervention in the genetic code of future people has traditionally remained "beyond the red line."

Today, a Chinese scientist claims to have created the first genetically modified babies. The ethical aspect of his work has already been criticized.

But why shouldn't scientists interfere with genetics if they want to fight disease?

Human GMOs

Professor He Jiankui removed a key protein from the DNA of twin sisters' embryos. This means that they will have innate immunity to HIV.

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According to the professor, he worked on the CCR5 protein in secret from the Shenzhen Southern University of Science and Technology, the institution where he works.

Eight couples took part in his research. Each pair had an HIV-positive father and an HIV-negative mother.

Britain approved the birth of children from three parents

These twins have already been born. Professor He said that there is already a second pregnancy at an early stage with a genetically edited embryo.

The scientist has not yet provided evidence of his scientific achievement. And his native university plans to investigate his activities in connection with the violation of academic standards.

And if the results are confirmed, this experiment will be a turning point in science - and at the same time will raise difficult questions of a moral and ethical nature.

Next generations

"Gem-line gene editing" (namely, modifications to the DNA of an embryo that can develop in humans) offers hope that gene mutations can be corrected and disease prevented from being passed on.

Image copyright, Getty Images

Image caption,

Editing the embryo's DNA means the change can be passed on to future generations

But the practice raises an ethical dilemma: tampering with generational genetic code. Now we are talking about the DNA of not one person, but potentially many people.

In many countries, this practice is strictly prohibited, and gene editing tools are only allowed to be used in non-reproductive adult cells.

For example, in the UK, scientists are allowed to perform gene editing experiments on decommissioned IVF embryos, but it is forbidden to bring them to the state of the fetus.

In the United States, guidelines are looser on this. Discussions continue in Japan, but they are only about experiments.

The Chinese government has ordered an investigation to find out if Professor He violated the law by transferring genetically modified embryos to his mother.

According to the Vice Minister of Science and Technology of China, there was a violation. In an interview with state media, Xu Nanping said he was "shocked" and that Professor He's experiment is prohibited by Chinese law.

Like other countries, China allows in vitro experiments with human embryonic stem cells for a maximum of 14 days, the deputy minister added.

"Prevent suffering " "

However, Professor He is proud to have altered the twin sisters' DNA, which he claims will protect them from contracting HIV if they ever come into contact with the virus.

Image copyright, Getty Images

Image caption,

Professor He defended his work

But at that stage, the embryos were healthy. Professor He intervened in a process that could have unpredictable consequences, and many question the wisdom of this decision.

Professor Giulian Savulescu, an ethicist (Oxford University) explained to the BBC: "As a result of the experiment, normal healthy children were exposed to the risk that gene changes carry, while the real benefit of this seems doubtful. "

Others argue that today HIV can be easily controlled - with treatment, the viral load in the blood can be reduced to undetectable levels.

Some scientists are concerned about deleting the gene from twins, which could leave them vulnerable to other diseases such as West Nile and the flu.

"Gene modification itself is an experiment. It is still associated with off-target mutations that can lead to genetic problems early in life and later, including the risk of cancer," explained Professor Savulescu.

Image copyright, Getty Images

Image caption,

Scientists have warned that mutations can lead to other problems, such as cancer

Dr. Yalda Yamshidi, an expert in human genetics at St. there is little information on the long-term consequences. Most people would agree that experimenting on humans to make them immune to avoidable disease just to enrich our knowledge is morally and ethically unacceptable. "

Designer babies

Some scientists are concerned about the possible misuse of this technology in eugenics to create genetic discrimination.

But Professor He claims that the focus of his work is to create babies who won't get sick, not designer babies with the desired color eyes or high IQs.

"I understand that my work can be perceived ambiguously. But I am convinced that families need this technology, and for their sake I am ready to endure criticism," he said.

However, the Chinese scientist may not be the only one. This year, Britain conducted an investigation into the bioethical aspects of changing human genes. According to his conclusions, such a practice is "morally acceptable".

At the same time, changing the genome "should not increase inequality, discrimination or division in society," the investigation concluded.

"Revolution"

Image copyright, Getty Images

Image caption,

Gene modification has been shown to prevent genetic liver failure in mouse embryos

CRISPR technology, which performs gene editing, first became known in 2012 goua. Since then, many have been interested in the question of whether we will soon see genetically modified people.

CRISPR uses "molecular scissors" to change specific sections of DNA - cut, replace or correct them.

The discovery of CRISPR "revolutionized" the field, making it so easy to rewrite and edit the genetic code for the first time in history.

In early 2018, scientists in the US used this technology to prevent genetic liver failure in mice.

This treatment has proven effective in rodents after birth. Researchers at the Children's Hospital of Philadelphia have shown that they can make this change before mice are born by editing their genes.

But they warn: "any transfer" of this work to people will create "substantial difficulties."

Scientists keep in mind that the potential consequences of such actions go beyond scientific innovation.

This will require us to come to terms with very difficult ethical dilemmas.

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Genetic analysis - DNA tests on saliva

Genetic analysis of saliva

today it is possible by analyzing saliva for genetics.

Fluid produced by salivary glands like blood, hair, nails or urine contains the same set of genes and is excellent for this type of research. Knowing your genetic code enables a person to make his life better and longer.

The genetic code does not change throughout a person's life. Therefore, this analysis can be performed both for adults and infants from 2 months.

What saliva DNA can tell:

Describe hereditary predisposition to various serious diseases, such as oncology, diabetes, hepatitis, mental illness, allergies, etc.)

Identify individual genetic pathologies

Understand the possible causes of infertility and problems that women experience during pregnancy

Determine a person's tendency to alcoholism or drug addiction

Diagnose intolerance to certain medications, products

Diagnose why certain cosmetic procedures do not suit you

Cost

	DNA - TEST	PRICE, RUB
Light 7 gene genetic analysis	10. 800
Fit genetic analysis for 17 genes	21.500
Wellness 32 gene genetic analysis	30.000
Baby 12 gene genetic analysis	15.500
Beauty 34 gene genetic analysis	28.000
Specialist consultation on genetic test results	2000

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Children and infants from 2 months. can be analyzed no earlier than 30 minutes. after feeding
The sampling material for the study is taken with a cotton swab from the inner surfaces of the cheeks.

DNA test results are ready! Within 30-35 days you will receive the results of the analysis in electronic form, in the Pdf format of the catalog to your e-mail. The catalog is a kind of report with recommendations that will help you properly adjust your diet and lifestyle without severe restrictions.

DNA - BABY TEST

DNA - BABY TEST PARENTS NEED TO KNOW EVERYTHING ABOUT THEIR CHILD!

The test aims to identify problems in a child from an early age. It is done once in a lifetime, our DNA does not change with age and it can be done from 2 months. The baby test examines 10 genes. In fact, there are many more genes, but the most important ones that can cause pathologies are no more than 50. The rest are dormant and do not affect the body. The test will help you understand what your child needs for full development and good health.
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Individual need for nutrients and vitamins;
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Having intolerance to gluten and lactose and other foods to which allergies may occur and further complications of underweight or childhood obesity;
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Innate ability for sports - this will help determine which sports sections are optimal
will be optimal, suitable for its bodily functions.

Genetic tests don't just provide information about your genes. This is an investment in increased access to personal genetic information, it is confidence and health, regardless of the risks of which diseases are determined by your genes.

DNA - BEAUTY TEST

IN OUR CLINIC IT IS CARRIED OUT A DNA - TEST - BEAUTY IN ORDER TO UNDERSTAND HOW TO PRESERVE NATURAL BEAUTY AND YOUTH OF SKIN AND HAIR.

Do you know what kind of care your skin and hair needs, or are you just guessing and experimenting? You need a Beauty test if you notice that the general recommendations and advice of cosmetologists, hairdressers and beauty bloggers, advertised brands do not suit you!

DNA skin care is unique in its kind, unlike the advice of friends and bloggers advertising various creams and procedures, it includes:

An individual assessment of the condition of your skin: moisture, elasticity, antioxidant protection;
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Diagnosis and recommendations for a balanced diet, taking into account the necessary vitamins and supplements;
Calculates the risks of a possible skin reaction to sun exposure and consumption of sweets
Provides a 100% reliable forecast of age-related changes
Determine the best treatment methods
Helps with rehabilitation
Choose skin products that are right for you.
Allows you to identify a tendency to various types of alopecia, including androgenetic alopecia.
what components are missing in the body for hair growth, which allows you to choose the most accurate procedures for further treatment

As a result: You will receive an individual anti-age program, preventive skin and hair care that suits your genotype. Find out why acne, blackheads, dryness and hair loss appear. If you want to always look good, but you can’t get rid of bags under your eyes, dull hair color, tired look!

WELLNESS DNA TEST

WELLNESS DNA GENETIC TEST THAT STUDIES 32 GENES. WELLNESS GENETIC ANALYSIS WILL ALLOW YOU TO ACHIEVE YOUR BEST PHYSICAL FORM AND COLOR!

WELLNESS TEST RESULTS ALLOW:

Choose the optimal, balanced diet just for you;
Factors that inhibit the process of losing weight are diagnosed;
DNA test evaluates your congenital parameters. Namely, strength, speed, endurance;
Possible risks of the body's susceptibility to sports injuries, various diseases are diagnosed;
It is determined what type of muscles you have and the rate of their growth. This indicator is especially important for athletes and fitness people;
Features of metabolism and energy consumption by the body are determined;
Identified foods that are not suitable for nutrition, causing more harm than good to the body. Conversely, foods are vital to you;
Individual need for nutrients and vitamins.

Unlike popular diets, DNA nutrition is compiled taking into account the real source of energy for the body and its reaction to various foods. If you decide to change your lifestyle and diet. If you are tired of dieting, you just need to make a healthy diet, change your eating habits, and choose the right physical activity. All this is easy with our DNA test.

In our clinic, all DNA diagnostics are carried out at the She Multidisciplinary Clinic at emb.