Lessons from a pregnancy and childbirth

My day job is as a neurologist and clinical researcher with a particular interest in stroke. I am also the mother of a healthy daughter, now 2 years old. There was nothing extraordinary about my experience of pregnancy and childbirth. However, the experience illustrated rather well to me three fundamental challenges facing health care and research: inequality in access and resources, the commercialisation of health and disease, and well meaning but misguided attempts to protect participants in medical research that can in fact harm both the participants and the research.

I received an impressive amount of easily accessible health care during an uncomplicated pregnancy: antenatal checks and classes, postnatal home visits from the midwife and health visitor, and regular drop-in sessions with the health visitor for advice, baby weighing, and socialising. If only we could provide patients who have some of the commonest neurological conditions (strokes, epilepsy, multiple sclerosis) and their carers with this kind of access to advice, information, and support. It is starting to happen in neurology, but the difference in resource allocation is striking.

I received a plethora of commercial “educational material”

My increasing concern about the profound impact of commercial influences on medical care and research made me acutely aware of their role in my care. At antenatal classes, during my brief stay in the maternity ward, and afterwards I received a plethora of commercial “educational material” telling me about the best skin and haircare products for me and my baby; the most comfortable, absorbent nappies; the best breast and bottle feeding paraphernalia; the healthiest selection of baby food and milk powder; the most stimulating toys and videos to enhance my baby's development; and so on. Much of this material was handed out—and so implicitly endorsed—by care assistants, midwives, and health visitors. New parents are highly susceptible to this sort of marketing. They are often eager for—and uncritically receptive of—information on how to maximise their chances of producing a healthy, intelligent, coordinated, musical, artistic, emotionally well balanced, and sociable child. And the commercial sector makes effective use of healthcare services and professionals as a free marketing vehicle. Unsurprisingly, there seems to be no really decent, unbiased evidence that the often costly products are in any way superior to cheaper alternatives.

A few days before my baby was due, ultrasonography showed a previously unsuspected breech presentation, and attempts to turn the baby were unsuccessful. My partner and I read the relevant Cochrane review and opted for delivery by Caesarean section. So far so good for the implementation of research in practice. However, just before I was taken to theatre a research nurse approached me to ask whether I would consent to some umbilical cord blood being taken for stem cell research. Before signing my consent I had to read a one page information leaflet and respond to several questions about my understanding of the study and my freedom to refuse or withdraw at any stage.

Although not unwell (as many people invited to take part in medical research are), and despite my medical background, I was excited and anxious about the approaching birth of my first child, and I had to concentrate hard to fully understand the leaflet. At first I thought I was being asked for some of my baby's blood and wanted to know more about the risks. Once I appreciated that the blood was to be taken from the placenta after the cord had been cut, making the research entirely non-invasive and not at all harmful, I was more than happy to sign, and I did so, feeling that I need not have been asked at all.

No doubt this consent procedure was designed by the researchers to satisfy the research ethics committee; as a researcher myself I recognised several of the standard approved phrases in the leaflet and consent form. In fact, the consent process was the only remotely harmful part of the study: this, not the research itself, was an unnecessary intrusion and increased my anxiety. Furthermore, if in my heightened emotional state I had misunderstood what I was being asked and refused consent, or if the research nurse had been ill or on holiday, then the placenta and cord blood would have been needlessly discarded. The need for consent certainly doesn't protect any right I might have for the cord blood to be saved when something useful and non-harmful could so easily come out of it. And, if the research were publicly funded, what about the rights of taxpayers not to have their money wasted on a process that increases costs because of the additional resources needed to seek and document consent and that prolongs the research because of the wastage of samples where no consent is obtained? Is that ethical?