In a study recently published in Children, researchers asked parents how they decide whether their newborn baby can join a medical study.
Parents gave steady answers to questions about facts and trust, but their answers changed over time.
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To better understand conditions like fetal and neonatal alloimmune thrombocytopenia (FNAIT), doctors need to conduct studies involving newborns. But since babies cannot decide for themselves, their parents must give ‘informed consent’, which means agreeing to let their baby participate after they learn the risks and benefits.
“Obtaining parental informed consent represents one of the greatest challenges in neonatal research,” the study authors wrote.
To assess parental attitudes toward newborn participation in clinical research, researchers in Athens, Greece, have built a new survey that asks parents how they decide whether their newborn baby can join a medical study. The 33-question survey asks about parents’ backgrounds, what they know about research, their understanding and experience of the consent process, how much they trust doctors and nurses and how they feel about their baby participating in a research study.
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Between September and December 2025, 20 parents at Aretaieio University Hospital in Athens, Greece, filled out the survey twice, two to six weeks apart. The researchers checked whether parents gave the same answers both times.
Basic facts, like age and education, matched perfectly. Parents answered quite consistently about letting their baby try a new treatment, but less consistently about studies that only collect information and provide no treatment to the newborn. Feelings of enthusiasm about the opportunity for their child to participate in a research study often shifted.
The researchers called their work an early step. It only involved a small number of parents at a single hospital in Greece, so the results may not apply elsewhere. The researchers plan to test the survey with many more parents at other hospitals.
