The Burden of Being of Childbearing Potential

For most of my 24 years, I have never really had to think of my reproductive organs as anyone’s business but my own. I have always known that women’s bodies are often commented on, judged, controlled, and made political. I had felt parts of that too, in the ordinary ways women do, but for the most part it had remained background noise - it had never stood directly between me and a better quality of life.

That changed recently when I took part in a drug trial that made a massive difference to my life. The medication was working incredibly well. Then, after a few months, I was told that if I wanted to remain on the treatment, I would need to use contraception because of the potential risk of pregnancy. Not because I was trying to become pregnant, or planning to, but because I was considered capable of becoming pregnant.

I made it very clear that I did not want to get pregnant, and that I understood why pregnancy during treatment, with a drug that is currently undergoing testing for side-effects, such as  reproductive impacts, could be dangerous. I took that risk seriously and completely agreed that pregnancy should be avoided. What I was not comfortable with was being told that continuing a treatment - that was genuinely improving my life - depended on my willingness to alter my body, tolerate possible side-effects, and accept another medical intervention I had already decided I did not want. Contraception was not something I wanted, needed, or had chosen for myself and I was comfortable taking responsibility for avoiding pregnancy without external intervention. I could see why the requirement made sense on paper, which was partly why the whole thing felt so difficult. At the same time, it made me wonder how much control over my own body I was willing to hand over as a condition for receiving something else I needed. Agreeing to contraception, simply to remain in the trial, also felt like accepting the idea that because a woman’s body can become pregnant, it can also be managed in anticipation of that possibility. My actual intentions seemed secondary to my reproductive capacity.

While trying to decide what to do, I began looking for women who had shared similar experiences. Partly, I wanted to know whether my reaction was unreasonable. Some of the responses I received from healthcare professionals had made me wonder whether I was simply being difficult. Was I being a stubborn, silly girl who wanted to have her cake and eat it too?

Once I started reading, I was surprised by how many women appeared to describe versions of the same feeling, not only in research settings but in everyday healthcare.

Women of reproductive age can be required to manage their reproductive capacity before they are allowed to participate in certain clinical trials. The reasoning is understandable: researchers have a responsibility to minimise the risk of foetal exposure to potentially harmful or insufficiently studied drugs. But in practice, it is the woman taking part who has to carry the extra burden of preventing a pregnancy that may never have been likely in the first place. For some women, participation may mean taking a contraceptive medication they would not otherwise use, accepting side effects, undergoing a procedure, or changing something deeply personal about their body simply to become eligible for research. Ethical concerns arise when these requirements are applied rigidly, without sufficient attention to a person’s actual circumstances, preferences, sexual behaviour, or realistic likelihood of pregnancy.  A 2019 study examining women’s views on contraception requirements in biomedical research found that some participants experienced these requirements as burdensome and felt uncomfortable being asked to use forms of contraception they would not otherwise choose. Concerns included contraceptive side effects, being required to use contraception despite not being sexually active, having to use two methods, and the sense that researchers were gaining control over women’s reproductive choices. For some, the requirement itself could even become a barrier to taking part in research altogether (Sullivan et al., 2019). That matters beyond the individual woman. If joining a clinical trial means accepting medication, procedures or side effects that women would not otherwise choose, some will understandably decide it is not worth it. Over time, these additional burdens may contribute to women being underrepresented in clinical research, not because they are less willing to be involved, but because more is being asked of them in order to qualify.

A similar pattern can appear in everyday healthcare. Questions about contraception or pregnancy may arise during appointments that have little obvious connection to reproductive health; for example, during medication reviews or consultations about acne or migraines. Sometimes there is a clear clinical reason for this, but context matters: UK research found that women were generally more comfortable discussing pregnancy intentions in primary care when the question felt relevant to the consultation (Hall et al., 2024). Without that attention to context, reproductive capacity can begin to feel as though it is always relevant, always a potential problem, and always something that needs managing. A 2021 UK report on long-acting reversible contraception (LARC), including implants, intrauterine contraception and contraceptive injections, found that 43.8% of women said they had felt pressure to use a LARC method (Burgess et al., 2021). That is a striking figure, and it highlights the gap that can exist between how these conversations are intended and how they are experienced. What a healthcare professional sees as sensible or responsible counselling may be experienced by the woman on the receiving end as pressure.

This resonated strongly with my own experience. At one point, a healthcare professional, who I genuinely believe had good intentions, tried to persuade me to have an IUD by describing the insertion as “as easy as putting in a tampon.” But, an IUD insertion is a medical procedure, and should not be compared to putting in a tampon. For some women it can be painful, distressing, or physically difficult, and it can come with side effects that continue well beyond the appointment itself. Describing it so casually minimises all of that and can make the person hesitating feel as though they are being unreasonable. It also relies, even unintentionally, on the imbalance of knowledge between clinician and patient.

This raises another question: if someone agrees to a procedure after being given an overly simplified version of what it involves, how freely informed is that consent really?

After all of this reading and reflection, I could finally explain why that requirement had affected me so strongly.

What bothered me was the sense that my own judgement was not enough. I could understand the information, make decisions, and take responsibility for avoiding pregnancy, but none of that seemed to count for very much. My body was still treated as something that needed to be medically managed from the outside before I could be trusted to continue treatment.

The irony was difficult to ignore. The potential risks to a future pregnancy appeared to carry more weight than the preferences and concerns of the non-pregnant woman actually sitting in the room: the hypothetical was taken extremely seriously, while the person who was definitely present and directly affected could begin to feel remarkably easy to dismiss.

None of this means that reproductive risk should be ignored. Researchers and clinicians have a responsibility to prevent harm, and patients need clear information about uncertainty and potential risks. But recognising reproductive risk should not end the conversation about autonomy. When contraception is an absolute condition of accessing a treatment or participating in research, it should be acknowledged for what it is: an additional medical intervention that the woman is being asked to accept, with its own risks, side effects and consequences, not a minor inconvenience she should simply get over.

Protecting a potential future foetus and respecting the autonomy of the woman who exists in the present should not have to be opposing ideas. Yet when reproductive capacity becomes something that must routinely be managed before a woman’s own judgement can be trusted, it risks reproducing a familiar pattern in medicine: treating women not simply as decision-makers, but as bodies whose reproductive potential requires supervision.

Maybe that is the real burden of being considered “of childbearing potential.” The possibility of pregnancy follows you everywhere, even when you are not pregnant, do not want to be pregnant, and do not see pregnancy as relevant to the life you are actually living.

References

• Burgess, T., Eastham, R., Limmer, M., Murphy, C., Raymond-Wlliams, R. and Sowemimo, A. (2021) Long Acting Reversible Contraception in the UK. British Pregnancy Advisory Service. Lancaster University research directory

• Hall, J.A., Wilkinson, K., Haddon, C. and Barrett, G. (2024) ‘How, when, and who should ask about pregnancy intentions in primary care? A qualitative study of women’s preferences’, Family Practice, 41(2), pp. 131–138. doi: 10.1093/fampra/cmad114. PubMed

• Sullivan, K.A., Little, M.O., Rosenberg, N.E., Zimba, C., Jaffe, E., Gilbert, S., Coleman, J.S., Hoffman, I., Mtande, T., Anderson, J., Gross, M.S., Rahangdale, L., Faden, R. and Lyerly, A.D. (2019) ‘Women’s views about contraception requirements for biomedical research participation’, PLOS ONE, 14(5), e0216332. doi: 10.1371/journal.pone.0216332.

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This article was written by Paola Cavallaro and edited by Rebecca Pope, with graphics produced by Saba Keshan. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.