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Evidence Library · Being heard

Being heard in fertility care

What to ask for, and what the evidence says about asking.

The evidence in this part points at one conclusion more consistently than any other: fertility patients are frequently not given the information they need to decide, and the strongest predictor of regret is having felt the decision was made for them.

Three findings, put side by side:

  • Decision regret was 66% overall and 75% among women who felt the specialist had contributed more to the decision than they had.
  • Only 37% of UK fertility patients said their clinic explained the risks of an add-on; only 50% said the effectiveness was explained.
  • In a randomized trial, women shown honest information about a fertility test wanted it substantially less than women shown the seller's version.

That last one is the important one. It is direct experimental evidence that the demand for unproven fertility products is generated by the information environment rather than by the patients. Which means the fix is information, and the information is available.

This is the closing topic of Part 1. The questions below gather up what the rest of the part has been building toward.

What the field says about your role in thisBioethicists have examined the argument that a patient asking for an add-on justifies providing it, and concluded that in a commercial setting it does not. A clinician who sells an unproven treatment because you requested it has not respected your autonomy. They have skipped the step where you were told enough to decide.

So if you have asked for something and been given it without a conversation, you have not been given more control. You have been given less.
Questions worth having on paper at every fertility appointment
  • "Is that success rate per transfer, per retrieval, or per cycle started?"
  • "What is your own clinic's result for someone like me, not the national figure?"
  • "What would happen if we did nothing for six more months?"
  • "Which parts of this plan have randomized evidence behind them, and which do not?"
  • "What does each extra item cost, and what does the evidence say about that specific item?"
  • "If this cycle fails, what would you change, and why?"
Use the question box under any topic in this guide to write your own down. The printed record at the end collects them all onto one page.

None of this is adversarial, and none of it assumes bad faith from your clinic. It is the ordinary content of informed consent, applied to a field where the person recommending the treatment is usually also selling it. That structure is not anyone's fault. Working around it honestly is the job, and the questions above are how it is done from your side.

Where this comes from:
92. Lensen S, Hammarberg K, Polyakov A, Wilkinson J, Whyte S, Peate M, et al. How common is add-on use and how do patients decide whether to use them? A national survey of IVF patients. Hum Reprod. 2021;36(7):1854-1861.
25. Copp T, van Nieuwenhoven T, McCaffery KJ, Hammarberg K, Cvejic E, Doust J, et al. Women's interest, knowledge, and attitudes relating to anti-Mullerian hormone testing: a randomized controlled trial. Hum Reprod. 2024;39(9):2010-2020.
123. Ethics Committee of the American Society for Reproductive Medicine. Informed consent in assisted reproduction: an Ethics Committee opinion. Fertil Steril. 2023;119(6):948-953.
124. Stanbury C, Lipworth W, Gallagher S, Norman RJ, Newson AJ. What moral weight should patient-led demand have in clinical decisions about assisted reproductive technologies? Bioethics. 2024;38(1):69-77.
115. Ethics Committee of the American Society for Reproductive Medicine. Planned oocyte cryopreservation to preserve future reproductive potential: an Ethics Committee opinion. Fertil Steril. 2024;121(4):604-612.

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This page is educational. It supports the conversation with your own clinicians. It is not consent to any treatment, and it cannot assess you. If you are worried about a symptom now, see urgent warning signs.