Leading scientists are calling for a change in the law to help IVF patients donate unused embryos to biomedical research after a collapse in donations over the past 15 years.
The increasing commercialisation of IVF, overstretched NHS clinics and cumbersome paperwork are blamed for a 25-fold decrease in the number of donated embryos. Scientists described some patients going to “extraordinary lengths” to ensure their embryos could be used for research rather than discarded, with many private clinics failing to routinely offer donation as an option.
“There are tens of thousands of good quality embryos that are no longer needed by patients which could be incredibly valuable for research,” said Prof Kathy Niakan, of the University of Cambridge. “Unfortunately, very few clinics offer the option to donate.”
Figures obtained by the Guardian show that the number of embryos donated to research, after IVF treatment, fell steadily from 17,925 in 2004 to 675 in 2019, the most recent year for which data is available. In the same year, 76,427 embryos were transferred in IVF cycles and 172,915 were discarded, according to figures from the Human Fertilisation and Embryology Authority (HFEA).
Some scientists have been left struggling to continue research programmes at a time when rapid advances in genetics and culturing techniques are promising unprecedented insights into the causes of infertility, pre-eclampsia and a variety of genetic disorders.
Prof Niakan described being contacted several times a year by patients desperate to donate embryos and, on multiple occasions, driving across the country to collect embryos from clinics with a cryogenic storage box in the back of her car.
“Some [patients] had to go through counselling because it’s taken so long for them to be able to fulfil their wishes to donate to research. Some of them have paid extra storage fees just to give time for the whole process and all the paperwork to go through,” she said. “They shouldn’t be put in that position. Somebody needs to step in and make it a lot easier.”
A HFEA survey in 2017 found that a majority (58%) of patients would prefer to donate embryos to research rather than allow them to perish, with only 6% saying they would prefer their embryos to be discarded. Only about one in five clinics routinely facilitate donation.
Sarah Norcross, the director of the Progress Educational Trust, a charity focused on infertility and genetic conditions, said: “The sheer waste of human embryos that are being allowed to perish effectively by default, when researchers could learn so much from this precious resource, is a scandal. It is also deeply imprudent and shortsighted, when one considers that IVF owes its very existence to embryo research, and that private companies have benefited – and continue to benefit – from that pioneering work.”
A significant barrier to donation is that patients are required to consent for their embryos to be used in specific research projects, meaning that scientists need to coordinate directly with clinicians. Prof Niakan and others are calling for the creation of an embryo bank and for broader consent procedures to make it easier for clinics to facilitate donation and a merit-based appraisal of research.
An HFEA spokesperson said: “The number of embryos donated for research in the UK is relatively low for several reasons including that to donate embryos a specific research project needs to be consented to. The small number of embryos donated can make research challenging. We have recently made recommendations to government for changes to the law so that patients could donate embryos to a research embryo bank that could then allocate stored embryos to suitable research when needed.”
