The same techniques geneticists use to predict these diseases can be also be used to predict characteristics like intelligence or weight in adulthood. For now, Orchid is focused on providing disease risk reports to parents, but Genomic Prediction of New Jersey already screens embryos for “intellectual disability.”
Gabriel Lázaro-Muñoz, a bioethicist and lawyer at Baylor College of Medicine who has studied polygenic risk scores, says the ability to screen and select embryos for a wide range of traits veers into eugenics territory. “We have to have a serious conversation about how to use this technology in our society,” he says.
Negative attitudes about mental illness are already pervasive, and polygenic risk tests could further stigmatize these conditions. The idea that it’s possible to choose whether or not to reduce a future child’s risk of such conditions puts a lot of pressure on parents, he says. Beyond the issue of mental illness, should parents be able to choose their “smartest” embryo?
And even if couples wanted to pursue polygenic screening, the expense could be prohibitive. Orchid hasn’t publicly released the cost of its tests, but one source told MIT Technology Review that it charges $1,100 for its couple report. (Orchid did not respond to multiple interview attempts.) While the company is offering a financial assistance program to couples who can’t afford it, there’s still the price of IVF to consider. One IVF cycle costs $12,000 to $17,000, and getting pregnant often takes several cycles.
“This is reproduction for rich people,” says Laura Hercher, a genetic counselor and director of research in human genetics at Sarah Lawrence College. “What they seem to be saying is, everyone who can afford it should do IVF.”
Indeed, in a podcast interview Siddiqui suggested that more couples should use IVF to choose their healthiest embryos.
Hercher and others wonder whether that’s the best use of polygenic risk scores. “Are we comfortable with saying ‘Let the market decide what things we want to test embryos for’?” Hercher asks. “Or is time to step in and say ‘Are all uses of this justified?’”
Saving a life
That market for this technology is driven by demand from parents, and for some, knowing the genetic risks their child faces could be a godsend.
Laura Pogliano says having a test like Orchid’s could have helped her better support her son Zac, who was initially diagnosed with obsessive-compulsive disorder as a teenager in 2009. As his symptoms grew worse, doctors eventually determined that he had schizophrenia. Zac died from heart failure in 2015, at age 23. (An estimated 50% of sudden deaths in schizophrenia are from cardiovascular causes.)
Pogliano says if she had known about her son’s risk before he was born, she would have been able to look out for early signs and get him treatment sooner. Schizophrenia symptoms— hallucinations, delusions, confused speech, and disorganized thinking—generally start to appear in a person’s 20s, but changes in the brain can begin several years earlier.
She says Zac’s illness blindsided her family: “With schizophrenia, you think you have a healthy child, but you never actually did. The brain has been prepping for this disease for years.”
Pogliano says she would have raised her son differently if she’d known he was at high risk. She would have been more vigilant about his use of alcohol and marijuana, which can alter the nervous system and trigger psychosis in people with schizophrenia.
She hopes screening for schizophrenia will be routine someday. It’s different from guessing the risk of conditions like heart disease, breast cancer, or Alzheimer’s, she says: those diseases emerge much later in life, but parents have an opportunity to make a real difference in their kids’ lives if they know their schizophrenia risk.
“Designer babies isn’t the point,” she says. “All parents want is a path to health for their children.”