Zoom out on this tangle, and another question about informed consent comes into view: “I very much have to question how informed you could be about the potential benefits and the potential harms of the procedure when the biomedical community writ large has not answered to anyone’s satisfaction those very questions,” said Musunuru. “Could there truly have been informed consent? I would argue absolutely not.”
“The concept of informed consent is rooted in the principle of autonomy,” says Ormond, “and the idea that you should be able to make an autonomous decision about what happens to your body and your life.” Beyond the question of whether Grace and Mark were able to give informed consent lies the question of whether Nana and Lulu—the two babies whose lives will be shaped in yet-unknown ways by their status as the first germline-edited humans—were deprived of their human rights. With Grace and Mark’s help, He’s team created a pair of humans who now face a life full of endless unknowns; there is no way of predicting how their prenatal gene editing procedure will affect the health of them or their progeny. If either or both of the twins face severe illness or impairment due to He’s interventions, their situation will be very different from that of an adult facing side effects of a treatment they knowingly elected for.