In September 2015, it was reported that researchers at London's Francis Crick Institute (2015) had sought permission from the Human Fertilisation and Embryology Authority (HFEA) to use so-called ‘gene editing’ techniques on human embryos. Although it is illegal to use gene editing techniques in treatment, it is permissible for research if carried out under an HFEA license, and provided the embryos are destroyed within a fortnight.
So what is gene editing, and how might it influence the ethical landscape in which midwives operate? The essential tools of the process allow ‘molecular scissors’ to remove and replace defective portions of DNA from a genome. Although the basic technology has been available for some years, a recent refinement—clustered regularly interspaced short palindromic repeats (CRISPR) allied with a bacterial enzyme Cas9—has prompted major advances in this expanding field of research.
In spring 2015, Chinese scientists reported having used CRISPR/Cas9 technology on ‘non-viable’ embryos in an attempt to modify the gene responsible for the potentially fatal blood disorder ß-thalassaemia (Liang et al, 2015). Of 86 embryos treated with CRISPR/Cas9, 71 survived, 54 of which were genetically tested. Testing showed that although the technique had worked on 28, only a fraction contained the replacement DNA. The paper was published in the journal Protein & Cell after it had been rejected by Nature and Science, partly on ethical grounds.
Writing in Nature, Lanphier et al (2015) stated that using gene editing in human embryos with technologies such as CRISPR/Cas9 could have unpredictable effects on future generations, making it dangerous and ethically unacceptable. But a statement from leading UK research funders, including the Wellcome Trust and the Medical Research Council, outlined support for continued pre-clinical research using gene editing technology and called for a national debate on the ethics of genetically modifying human embryos (Wellcome Trust, 2015).
This raises the idea of ‘designer babies'. As Professor Julian Savulescu argued in a debate at Monash University Centre for Human Bioethics (2013), not only are designer babies already being created, but we have an obligation to create them not to choose hair or eye colour but to select certain other traits. He highlighted specific genes that have been shown to be associated with altruism, fidelity and violence.
But does editing out a piece of DNA that is associated with the possibility of an individual being violent in later life amount to treatment or enhancement? And who should advise prospective parents on whether it should be done? It seems possible that in the not-too-distant future such questions from prospective parents may need to be fielded by midwives.
Addressing practical concerns, Araki and Ishii (2014) consider possible outcomes if gene editing were to become an arm of preventive medicine. For example, should the long-term monitoring of children born using the technology last their whole lives, or even over successive generations, and could such monitoring be carried out in all countries? Would selection for treatment be confined only to those whose prospective parents can afford it? The authors contend that if a genetic disease were to no longer occur in a country by virtue of gene editing technology, this might impact the rights of people with that disease, assuming a posture against the existing patients who deserve respect and support.
But are parents already suffering under the tyranny of choice? Zeiler (2004) reports on a study involving a series of interviews with couples, exploring ethical aspects of IVF treatment that preceded pre-implantation genetic diagnosis (PGD). The researchers not only found that there is often a gap between theoretical discussions and actual practice, but also that an increase in choice can have the paradoxical effect of actually limiting couples' choices.
For example, some couples felt that they had to use IVF and PGD simply because the technology existed. They otherwise might have accepted not having more children or having gamete donation, or considered adoption, but because a technology is offered to couples and supported by doctors, couples may choose options that they might never have wanted otherwise.
As gene editing takes us further into the realm of the ‘new genetics’, some detect an almost evangelical zeal for genetic manipulation and, rightly or wrongly, conclude that choosing not to take a particular test might leave them open to the charge of reproductive irresponsibility. But if one's choice to court the risk of having a genetically diseased child is to be constrained or denied, questions of autonomy and the public regulation of reproductive behaviour arise.
The ramifications of gene editing extending beyond individuals raise the question of the interests of the patient versus those of the family and the wider community. This entails doctor and patient—and midwife—facing up to the challenge of addressing certain moral obligations: the challenge of making choices.