A Double-Edged Sword
(June 14th, 2016) After the UK granted scientists the permission to manipulate human embryos a few months ago, The Netherlands has now followed suit. Recently, the Dutch government said it would allow their scientists to grow human embryos for “limited” research. A mistake or a chance for science?
Edith Schippers, the Dutch Minister for Health, Welfare and Sport, has recently announced that the Government plans “to allow the creation of embryos for scientific research - and under very strict conditions, to give people the possibility of (healthy) children”. Under current law, the Netherlands only permits research on surplus embryos resulting from in vitro fertilization (IVF) procedures. The permission to cultivate embryos could prove very promising in the short- and long-term treatment of diseases like diabetes type 1, spinal cord injury, Parkinson’s disease and mitochondrial diseases. In addition, it hopes to benefit individuals that cannot conceive, following cancer treatment at an early age or those that do not possess healthy germ cells.
So what “strict conditions” are scientists, participating in this research, expected to adhere to? The announcement mentions that the 14-day rule is to be followed without exceptions. This rule restricts all scientific research involving human embryos to the first 14 days. This is because, it is after this two-week period that the embryo’s primitive streak, a band of cells defining the beginnings of an embryo’s head-to-tail axis, appears and the embryo gains its individual biological identity. Furthermore, the Dutch government also outlines that all donors that may potentially contribute to this research must be suitably provided with “proper guidance and information”.
2016 has been witness to very significant decisions in the context of both science and policy for embryonic research. Earlier this year, Britain took a step in this direction when The Human Fertilisation and Embryology Authority granted the first research license to genetically modify human embryos. This project will be run at the Francis Crick Institute by Kathy Niakan. It will involve genome editing (via the CRISPR/Cas9 system) in early stage embryos, to understand miscarriage with the ultimate goal of contributing to infertility therapy. The research will adhere to the 14-day rule and will not pursue in vivo implantation of the modified embryos (see also Lab Times online “Why Human Embryos?”).
In early May, researchers at the University of Cambridge, UK and the Rockefeller University, USA reported that they were now capable of sustaining human embryos in vitro for 12-13 days. This is a significant leap in comparison to the nine day limit that was known thus far. The researchers eventually destroyed the embryos in the study to avoid breaching the 14-day rule.
Naturally, any discussion on the topic of human embryo research is almost certainly accompanied by the hefty ethical implications attached to it, and rightly so. The scientific and political community is very wary of this topic. Genetically engineering human germ-line cells is forbidden in many countries of the European Union but not in the US or China. In the EU, the subsidiarity principle holds; it is for the member states to determine whether this research is permitted or not and under what conditions. This principle exists because the member states have large differences in their positions on the (moral) status of the human embryo, and hence the governing policy.
Who is to decide at what point an embryo ‘becomes’ a person? And what about the alarming ‘eugenics’ turn that such research could take? Designer babies that are smarter, larger, stronger or better looking may not be a figment of our imagination in the near future. One can argue that if regulations and ethics are strictly adhered to, responsible human embryo research could lead to promising contributions in the fields of developmental biology, reproduction biology and congenital disorders. We are, however, only human. With virtually no information on the long-term effects of gene editing before birth and the resulting unpredictable alterations that could be introduced into the human germ line, ethical watchdogs are very much justified in having reservations.
This especially holds true in light of the controversial study of the “world’s first genetically modified human embryo” carried out at the Sun Yat-sen University in China. In this particular case, both the potential of this research and the concerns associated with it came to the fore. The scientists set out with the goal to treat β-thalassemia, a fatal blood disorder, by genetically modifying the responsible HBB gene in human embryos. They employed the CRISPR/ Cas9 system to remove and replace the disease-causing region of the HBB gene, utilising non-viable embryos sourced from IVF clinics. The scientists hoped that this gene alteration would cure the embryos. The results were unfortunately quite different. Many embryos died, while in some embryos gene editing was completely unsuccessful. Furthermore, the researchers reported off target effects and mosaicism. This means that the gene editing had taken place at an incorrect site or that it was manifesting itself unequally in the treated embryos. These mistakes could not have been predicted before this study was carried out and reflect just how little is known in this field.
Hence, the Dutch Government’s decision to promote human embryo research is akin to a double-edged sword. It brings into conflict two principles that are very dear to all humans, the first being the responsibility to cure disease and reduce suffering; the second being the responsibility of respecting human life. Which is more important?