An exploration into the potential reproductive future with genetic editing in the United Kingdom

In February 2016 the Human Fertilisation and Embryology Authority (HFEA),
responsible for overseeing the standards of quality and safety for human gametes
and embryos (Birk, 2009:6), granted a licence to the Francis Crick Institute to edit
genes in human embryos. The licence permits the institute to use CRISPR-Cas9
technology for early-development research and represents the world's first support of
such research by a national regulatory authority (Callaway, 2016).
According to YourGenome (2016) the CRISPR-Cas9 is a genome editing tool which
enables geneticists to remove, replace or add parts to a DNA sequence. They claim
that it is currently considered to be the most versatile and precise method of
manipulating genes, hence it is generating significant interest across a range of
disciplines. YourGenome (2016) explains that the tool works by introducing a
mutation into the selected DNA with an enzyme called 'Cas9'. Guided by a nucleic
acid, gRNA, the Cas9 enzyme is able to cut the two strands that form the DNA's
helix at a specific point thereby enabling parts of the DNA to be edited.
It is prophesised that CRISPR-Cas9 will have the potential to not only treat a range
of medical conditions that have a genetic component, but to also shape the future of
reproduction in relation to genetic diseases through germline editing (YourGenome,
2016). However, because changes made to germline cells, i.e. egg and sperm,
mean that they will be passed on to future generations, they pose a plethora of
ethical implications that will need greater examination. Thus, whilst germline editing
is presently illegal in the UK, as research develops it is envisaged that this could be
subject to change and is likely to bring about monumental scope for the future of
reproductive technologies.
As such, this proposed research will aim to prepare for this eventuality and thereby
hope to be of assistance to those that will influence policy and legislation in their
understanding of societal perspectives surrounding genetic controversies in relation
to reproduction, such as the Nuffield Council on Bioethics. In the first phase of
research, an online questionnaire would seek responses from around 500
participants with the intention of drawing out understandings and general opinions of
genetic editing. It is envisaged that this will generate both qualitative and quantitative
data which will help shape the overall analysis and feed into the interviews during the
second phase of research.
The proposed PhD research intends to extend the discussions raised in my MPhil
research on the ethics of attempting to control and/or manipulate genetics in relation
to disability and broaden the exploration beyond contemporary assisted reproductive
technologies (ARTs) into future possibilities with genetic editing. Such topics are of
great significance in contemporary society as the struggle for greater health and
wellbeing remain, especially as we become ever more expectant on technology
holding the key to our desired choices (Cederström and Spicer, 2015; Edward et al.,
1999). Thus, reproductive decisions and the range of options involving newtechnologies, particularly those that will have repercussions for future generations in
terms of their genetic information, continue to expand. As such, in continuation from
the discussions raised in my MPhil thesis, this research will not only explore the
moral dilemmas that arise when contemplating genetic editing as a reproductive
choice in relation to disability with potential patients, but also with professionals and
clinicians.