Dear PERK Members,
In September, we asked you a simple question: what actually happens when your child is due for vaccines?
767 of you answered. Your responses became the centerpiece of PERK’s formal comment to the U.S. Department of Health and Human Services, which asked for public input on how federal vaccine recommendations should handle informed consent and religious freedom. Your experience is now part of the federal record.
Here is what you told us.
Most parents get almost no conversation
87% of parents reported less than one minute of discussion, or none at all, before their child was vaccinated.
Informed consent depends on a real conversation, and for most of you that conversation never happened.
The information often never arrived
58% said they never received a Vaccine Information Statement.
Of the parents asked to sign something, 72.5% said they didn’t understand what they were signing.
A signature is not the same as consent.
Very few felt free to say no
We asked whether you felt you could ask questions or decline a vaccine without consequence.
Fewer than 1 in 10 parents felt fully free to ask or decline.
What happened when parents asked for a different approach
76% of you, 583 parents, asked at some point to delay, space out, or separate your child’s vaccines. Here’s what happened:
Roughly 1 in 5 parents who asked was warned of dismissal or actually dismissed by their child’s doctor.
When we asked about consequences more broadly, including requests to opt out or seek an exemption, the most common answers were:
Most parents had never heard of “shared clinical decision-making”
82% of you had never heard of it. It’s the federal category meant to signal that a vaccine decision should involve a real conversation between parent and doctor.
The right to a real conversation shouldn’t depend on which category a vaccine falls into. It should apply to every vaccine, every time.
One finding that cut against us, and we reported it anyway
Only about 5% of parents reported billing or coverage confusion. That wasn’t a common problem in our community, and we told HHS so.
In your own words
720 of you gave us permission to share your written answers with HHS, and many of you wrote a lot. A few themes came up again and again:
Consent was assumed, not asked. Many of you described a nurse walking in to say your child was “due” for a list of shots, with no point where anyone asked whether you agreed.
Being informed took your own research. Even among parents who said yes, they gave informed consent, many added that they only felt informed because they had done the research themselves. They didn’t get it from the doctor.
Questions were met with frustration. Parents described irritation, condescension, and being made to feel like a bad parent for asking.
Some of you found good doctors. Several parents told us about pediatricians who listened, answered every question, and respected their decisions. That is what it should look like everywhere.
What would have helped: time, full information before the appointment, an honest discussion of both risks and benefits, and the sense that saying no was a real option.
What we asked HHS to do
PERK asked the Department to adopt a presumption in favor of individual autonomy, informed consent, and religious freedom, so that every vaccine recommendation starts from the family’s right to decide. We also asked that religious exemptions be protected rather than treated as a loophole, and that no recommendation be allowed to quietly harden into a mandate.
We did not ask HHS to weaken vaccine recommendations. A strong recommendation and genuine respect for parents are not opposites. You should be able to have both.
Something you can use right now
Federal law requires your child’s provider to give you a Vaccine Information Statement before each dose of routine childhood vaccines. You’re entitled to it. Ask for it before the visit so you have time to read it, and ask your questions before anything is given.
Read the full filing
Our resource summary of the HHS comment, including the full survey results, is now in our Resources section: (Click Here)
Thank you to every parent who took the time to answer honestly, and especially to those who shared hard experiences. Because of you, the federal government now has a record of what informed consent looks like from the parent’s side of the exam room.
Sincerely,
Amy Bohn
Co-Founder and CEO, PERK
