Lost Voices is a short film made to accompany Cut + Paste, the Francis Crick Institute's exhibition exploring the ethics of genome editing (see BioNews 1185).
As an A-level student in Cambridge, I haven't been able to attend the exhibition in London. Yet I was delighted to be asked to review the accompanying short film after interviewing Sandy Starr – deputy director of the Progress Educational Trust, the charity that publishes BioNews – for an essay on genome editing that I wrote at school.
The first person whom we meet in the film is Martin – a man living with a genetic condition, the nature of which is not disclosed. Martin recounts an occasion when his two daughters were genetically tested for his condition and discovered that his youngest 'perfectly made, beautiful daughter, who has a brilliant mind' was a carrier.
His daughter, only 15, was reportedly then told by a geneticist: 'Don't worry, when you are older and if you become pregnant, we have a test now, and if we find the child, the baby you're carrying... has the same genetic defect, we can offer you a termination.' At this point, we see the father fill with rage as he sums up what he understood this to mean: 'Don't worry, if you're carrying a child that is like you and your father, we can get rid of it.'
This is the first of six hard-hitting testimonies presented, to discourage the public from viewing genetic conditions as needing to be 'fixed'. Overall, filmmaker Esther Fox very successfully makes the case that society should listen attentively to the voices of these people, when making decisions about the adoption of genome editing.
It should be noted that the six people we see and hear in Lost Voices are in fact actors, speaking the words of real people living with genetic conditions. This helps to make the film more dramatic and consistent, but a certain level of authenticity is inevitably lost. I was also left wanting to know more about the genetic conditions of all six individuals – it is made clear only that one is deaf, one has autism and one has Down's syndrome.
While the film is greatly valuable as a perspective on potential effects of the future widespread use of genome editing, the uninformed viewer could easily come away with the impression that all individuals with genetic conditions are vehemently opposed to the use of such technologies. In fact, in a UK Citizens' Jury on Human Genome Editing held by Wellcome Connecting Science – made up of individuals affected by genetic conditions – a clear majority felt that it was worth considering a change to the law to permit editing the genomes of human embryos (see BioNews 1180).
This is not to minimise the legitimate concerns of the film's participants, but to recognise that there are widely differing and equally arguable ethical viewpoints in this debate. The experience recounted by Martin is horrific, but it is not universal and it I doubt that it is commonplace. The reality is more nuanced, and it is important to see the film as one contribution to a wider debate.
While effective from that perspective, and an impressive feat in 19 minutes, 'Lost Voices' is not – and to be fair, does not purport to be – a balanced representation of the potential benefits and adverse effects of genome editing. I would suggest also exploring the Cut + Paste exhibition at the Francis Crick Institute, and doing one's own research, in order to contemplate arguments for and against the use of this technology.
Genome editing is already helping people with genetic diseases. For example, remission has been seen in children with treatment-resistant leukaemia during a clinical trial of a therapy that uses a refined version of CRISPR-based genome editing (see BioNews 1195). Furthermore, two potential new treatments for Alzheimer's disease using the CRISPR genome editing approach have been reported at the Alzheimer's Association International Conference, in Amsterdam, the Netherlands (see BioNews 1199).
These examples, however, involve genome editing in somatic cells, and the edits are not passed down to future generations. Lost Voices focuses specifically on genome editing in germline cells, whose edited DNA can subsequently be passed down via sperm or egg cells.
Questions about the wider consequences of genome editing are essential, and should be considered alongside the development of any related treatment. One concern is the 'slippery slope' argument - how can we ensure that the genomes of human embryos are edited only to ensure that a child is not affected by a severe or life-threatening condition, and not (as is somewhat hyperbolically suggested in the film) to eliminate 'red-haired children because they are at a higher risk of skin cancer.'
Lost Voices suggests that genome editing has the potential to completely remove all genetic conditions from the general population. Viewers should be aware that this is entirely speculative. Realistically, only monogenic conditions are likely to be addressed by germline genome editing in the foreseeable future. Furthermore, germline genome editing would – like prenatal genetic testing – be highly regulated.
The film has a simple vintage feel, which I think is a good stylistic choice, in order not to distract from the messages conveyed. There are also subtitles for people who are hard of hearing and a narrator for people who are blind, making the film accessible to the widest possible public while giving a sense of the diversity of lived experience among people with disabilities. The film makes the valid point that having a disability can be identity-forming in a positive way, and the film gives people living with genetic conditions a platform to express their pride in being the way they are.
As a teenager, I am by no means an expert in this field. My own view is that we should adopt human germline genome editing but under tight, specific regulations, and not with the intention of completely eliminating the conditions represented in the film. I worry that the film provides only a partial perspective on genome editing, and in some respects a misleading one.
Ethical issues surrounding the use of genome editing in humans certainly deserve in-depth discussion, as does the way we think about disability and disease. This was the main message that I took from watching this incredibly emotive film.
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