Information about possible birth defect risks from assisted reproductive techniques; scare tactics or essential disclosure?

There was a report in The Sunday Times yesterday that Prof Lisa Jardine, of the government’s regulatory body the Human Fertilisation and Embryology Authority (HFEA), is to recommend that fertility clinics warn prospective patients of the risk of birth defects associated with IVF, ICSI, twin pregnancies conceived using assisted reproduction and embryo screening. What does that mean for you, if you are in the midst of or have already availed yourself of one or more of these treatments?

We have heard this before – The first thing you should know is that this is not strictly new news. Eleven months ago, the Daily Mail carried an article stating that “IVF children have higher risk of infertility, obesity and diabetes.” In June of last year, it was reported by the HFEA that a study in France showed that there is a small increase in risks of congenital abnormalities in children born as a result of IVF or ICSI. More recently, The British Medical Journal has recently published information from a study that shows women who have one embryo transferred during IVF treatment are five times more likely to give birth to a healthy baby than those who receive two embryos.  This is not meant to frighten you further, but to show that there are reports in the news all the time and they need to be read carefully and validated.

Risks associated with assisted reproductive techniques – The next thing is to be aware that the HFEA is merely saying that there is a greater risk of health problems associated with assisted reproduction, but not definitively how much greater the risk is. Their intention is merely to be as open as possible with women about any risk before they give consent to starting an assisted reproductive procedure. I am absolutely in favour of that, as the process in which individual women, or couples, go through should be one of fully informed decision-making. What I want, however, is enough specificity to help people understand the results of the studies, as well as a user-friendly explanation of how likely it is that those conditions may affect the health of their child. The Sunday Times article only alludes to possible side effects of IVF and other fertility methods, but gives no statistics. The list of potential health problems in children born of assisted reproductive techniques (A.R.T.), including:

·        heart defects, cleft lip and neurological flaws;

·        low birth weight;

·        cerebral palsy;

·        cancer of the retina;

·        undescended testicles in boys born of IVF; and

·        Infertility in children born as a result of ICSI, a procedure in which a sperm is artificially inserted into an egg.

Risks associated with embryo screening – Additionally, the HFEA wants patients who choose to have their embryos screened for genetic defects before implantation, to be informed of “potential high risk of neurodegenerative disorders,” or brain disorders in their children.  Apparently, embryo screening which uses one cell rather than two cells is of less danger.  It’s important to note that “before issuing new guidelines, the HFEA is to carry out a further review of scientific papers on the health outcomes of assisted reproductive technology children.” That means that no guidelines have been issued yet and that fertility clinics are not yet required to provide this type of information.  Most people who have IVF will not feel the need for embryo screening as a matter of course. I assume that a fertility specialist would recommend the procedure only in such cases as when a genetic condition has already been identified as a possibile outcome. Consequently, the risk of the screening may be offset by the risk of the suspected defect which could already present. Still, I believe that this information should be included with all of the factors relevant to the patient’s decision-making, as it may make a difference to the type of screening undertaken.

What should you do? By all means, you should feel free to ask your medical practitioner for an explanation of these risks. It is worth mentioning that even if the risks of birth defects are somewhat higher in assisted reproductive births than in naturally conceived births, the incidence will still be relatively low. A good analogy might be the risk associated with amniocentesis. There may be a higher risk of miscarriage in pregnancies in which amniocentesis is performed, however, the risk is still less only about 1% of pregnancies in which the miscarriage will actually occur as a result of the procedure. The patient and her partner are the only ones who can decide whether the risk is a reasonable and acceptable one, given the context in which they are operating.

Weighing and balancing – If you cannot conceive naturally, you must decide whether a greater risk of birth defects in A.R.T. births is acceptable to you, relative to your desire to have a baby by any means. Weigh it against the chance that no birth defect will occur, but make sure to discuss how you would feel about having child with a condition like the ones listed above. I don’t have any overall statistics for you because they have not been issued yet, and may never be; you would have to take each study separately. The best way to make any sense of them is to restrict your exploration to those relating to the specific procedure  you will undergo.

Doing your own research – In order to fully explore these issues, you may want to do some of your own research, starting with the HFEA website, which has an excellent section for patient information. Then, if the information you discover leads to questions that you and your partner find difficult to resolve, you may want to talk to a fertility coach who can help you explore your values and priorities specific to your proposed fertility treatment. Just remember, the HFEA seeks to hold the fertility industry accountable, in line with public policy and to the patients that use it, for the protection of all concerned. While the media reports the findings of studies and government reviews of those studies in a way that sometimes makes them seem of greater or more immediate importance than they actually are, it is better to have that information available to us than to be kept in the dark.

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One thought on “Information about possible birth defect risks from assisted reproductive techniques; scare tactics or essential disclosure?”

  1. Thank you very much Lisa, a really informative & helpful round up of the current information and advice on where to go for more information.

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