A new tool allows parents undergoing in vitro fertilization (IVF) to screen their embryos for health issues, but is it ethical?
Genetic disease is believed to be linked to 41 percent of U.S. infants’ deaths, while more than 2 million children in the country have a genetic condition.
U.S.-based company Nucleus is offering people having IVF the chance to select their embryos by using software that highlights various genetic markers linked to health.
Technology that tries to prevent genetic diseases like sickle cell disease, where patients have unusually shaped red blood cells, is already in use.
“This type of selection of specific embryos as a result of IVF is already occurring in sickle cell care,” Dr. Crawford Strunk, vice chief medical officer of the Sickle Cell Disease Association of America, told Newsweek.
Parents are able to choose an embryo which tests negative for sickle cell disease, he said, and from which stem cells can also be taken for transplant to help cure children with the condition.
However, two experts raised concern over embryo selection, with one telling Newsweek that there are “deeply troubling ethical aspects” of IVF.
Preventing Genetic Disease and Improving
Embryo Health
Nucleus Embryo is described as “the first genetic optimization software that helps parents pursuing IVF see and understand the complete genetic profile of each of their embryos.”
With the tool, users can check for more than 1,000 traits and conditions, from single gene disorders like cystic fibrosis to complex conditions like heart disease and cancer risks, and mental health conditions like anxiety and ADHD, the company’s CEO Kian Sadeghi told Newsweek.
The technology is able to do this by not only detecting specific genetic markers for certain diseases but by also calculating polygenic scores, which combine up to a million genetic markers into a single number to determine someone’s genetic predisposition for a condition or trait. This includes coronary artery disease, breast cancer, type 2 diabetes and more.
“These integrated models further enable Nucleus to identify risk in embryos and adults as accurately as possible,” Jerry Lanchbury, a member of Nucleus’ scientific advisory board, told Newsweek.
According to a 2023 study by Rady Children’s Institute for Genomic Medicine, the deaths of five out of seven infants from genetic disease could have been prevented had “rapid, diagnostic [whole genome sequencing] been performed at the time of symptom onset or intensive care unit admission.”
In the U.K., whole genome sequencing has been brought in as a routine part of medical care, in order to increase “early detection and treatment of high-risk conditions.”
“The power of genetic prediction also goes beyond rare diseases. Genetic testing can lead to lifesaving preventive care,” Lanchbury said.
He added that genetic instances of high cholesterol, breast cancer and colon cancer cause a substantial number of deaths in the U.S. every year, with more than 3 million cases contributing to over 750,000 deaths per year. “Each of these conditions are preventable,” he said.
Lanchbury also said that “the environment, parenting and chance play profound roles in how genetic predispositions manifest,” so Nucleus ranks its predictions by strength so that parents can understand the range of likely outcomes for their embryos.
Debbie Wasserman Schultz, U.S. representative for Florida, told Newsweek that IVF can be a “godsend” for those with a BRCA gene mutation—which can increase the risk of breast cancer in women by 80 percent, Lanchbury said.
A breast cancer survivor herself, Wasserman Schultz added that IVF treatment “can help end generational genetic cycles of deadly disease in a family’s future.”
Technology that can test for a BRCA gene mutation in embryos and determine which embryos should be implanted as a result is “one of many incredible, life-saving benefits of genetic research,” she said.
However, while Sadeghi told Newsweek that “people have the right to genetically optimize their children,” various groups and experts say the technology raises a number of ethical questions.
Choosing Embryos Based on Characteristics
While giving parents the opportunity to select their embryos based on a number of traits and conditions could help to reduce the prevalence of genetic disease, it could also allow them to make their choices based on other factors.
“If we are talking about screening and selecting certain human embryos over others based on a host of characteristics and risks, then we are not talking about preventing harm to future human beings but making a choice as to which human lives are most worth living,” Jason Thacker, assistant professor of philosophy and ethics at Southern Seminary and Boyce College, told Newsweek.
He added that from the very moment of fertilization, “a unique human being is made which has inherent dignity, value and rights.”
“This is one of the deeply troubling ethical aspects of IVF in general, where children are often treated as mere commodities and not fully human in the embryonic stage,” he said.
He added that while modifying genes to prevent disease “may have some tangible benefits worth cautiously pursuing,” it is also important to be aware of how those decisions will affect the child and subsequent generations.
There has also been some concern raised about the implications of parents selecting embryos with a higher IQ screening.
“Parents can select for an average difference of 2.5 IQ points,” Sadeghi told Newsweek. However, intelligence has been found to be linked with schizophrenia, ADHD, OCD, Alzheimer’s disease and autism, he added.
“When you analyze genes for disease risk, you’re also uncovering insights into traits, since both share a common genetic foundation,” Sadeghi said. “What matters most to us is helping parents understand these genetic connections—so they can make informed choices based on what matters most to them.”
Thacker, however, warned that this technology was leading society into territory where “we will not always be able to accurately predict the downstream effects of our biomedical decisions, and we must be extremely cautious and seek wisdom as we go about techniques that affect real human lives—both in the embryonic stage, at birth and into future generations.”
IVF Treatment and Unused Embryos
Some concern, particularly from religious groups, has been raised over the fact that this technology could result in unused embryos being destroyed.
According to calculations by the Catholic television network EWTN, more embryos are likely destroyed during IVF treatment than via abortion each year.
Catholic belief determines a new human life begins at the point of conception or fertilization, meaning the loss of these embryos equates to a loss of human life, making IVF itself an ethical issue.
“IVF is morally condemned because it replaces, rather than assists, the sexual act of the couple in conceiving children and creates human life in a lab where the embryos are easily mistreated and even killed,” Joseph Meaney, a past president and current senior fellow of the National Catholic Bioethics Center, told Newsweek.
Meaney said gene therapy for embryos could be ethical as long as it was done to “treat or cure a genetic or medical defect.”
However, “It is not ethically acceptable to make genetic modifications to normal human beings with the intention of enhancement—defined as trying to create better than healthy human capacity,” Meaney said, pointing to those who may wish to select embryos based on higher intelligence for example.
Aware of these concerns, Sadeghi told Newsweek that Nucleus intends to overcome the issues “openly, transparently, and always guided by individual choice.”
“Everything we do is guided on the principle of responsible use of modern genomic science, and reproductive freedom,” he added.
Sadeghi said that until now, this sort of technology “has been discussed only behind closed doors—not in public.”
This means that Americans now have the opportunity to “listen to each other, hear each other out, and use this information to establish their views to ensure the insight Nucleus Embryo can provide is put to good use.”
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