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UNESCO's statement on CRISPR/Cas9 highlights the need for public engagement

12 October 2015
By Dr Silvia Camporesi and Dr Lara Marks
Dr Camporesi, bioethicist at King's College London (KCL); Dr Marks, historian of medicine, is affiliated to KCL, Cambridge University and UCL and is managing editor of WhatIsBiotechnology.org
Appeared in BioNews 823

The UNESCO International Bioethics Committee (IBC) has released a statement reaffirming an earlier moratorium called by a group of US scientists on the use of the CRISPR/Cas9 in human embryos. The US group met in Napa, California, in January to discuss the genome-editing technique and called for the moratorium two months later.

We argue that the current framing of the debate in terms of dystopic or imagined futures is too narrow and constrains the boundaries of the debate to germline applications (i.e. embryo modification). We also believe the call for a moratorium is the output of a model of ethics and governance that reveals a democratic deficit.

CRISPR/Cas9 has been referred to as a 'game changer' in genome-editing technologies. It differs from previous genetic engineering techniques in its efficiency and versatility, making it possible to edit many different genes in a cell line, plant or animal, very quickly. It is also not species specific, so can be used on organisms previously resistant to genetic engineering.  Another advantage of the technique is that it is very cheap, costing as little as $30.

The statement released by UNESCO presents two conflicting visions of genome-editing. On the one hand, it makes the over-hyped claim that genome editing is 'unquestionably one of the most promising undertakings of science for the sake of all humankind' and that it provides 'hope that certain illnesses, such as sickle-cell diseases, cystic fibrosis and some cancers could be treated or even cured'. On the other hand, it warns that it could be used for eugenic ends, opening up the possibility of 'designer babies'.

Such claims and counter-claims are not unique to the statement put out by UNESCO; they are a familiar refrain when it comes to debates surrounding the arrival of new technologies (for another recent example of synthetic biology see this wonderful graphic cartoon accompanying an article by Dr Claire Marris).

Framing the debate in this way, however, obscures other important applications of the technology that deserve ethical attention. The call for a moratorium adds intensity to the debate and emphasises the already narrow focus on applications of genome editing in human embryos. The difficulty with this is it elicits a particular public response of either fear and rejection, or of enthusiasm and a critical endorsement, and by doing so it prevents engagement with other issues raised by the technology beyond the germline that deserve our attention (some of which are outlined here).

The moratorium also reveals a democratic deficit. It is important to note that in calling for a moratorium, the scientists are also drawing on a particular framework established in the wake of the 1975 Asilomar conference. Organised by elite biologists to assess the risk of continuing experiments with a then-newly developed genetic-engineering technique – recombinant DNA – the aim of the conference was to address fears that such work could potentially create dangerous pathogens.

The Asilomar conference has gained an almost mythical status among US scientists, who view it as a model of scientific responsibility and regulation. Scholars of science and technology, however, have questioned such a stance, arguing that the aim and outcome of the conference was to confine the regulation of biotechnology within the professional boundaries of science to avoid external regulation and tougher questions about the implications of such technology for society as a whole.

The Asilomar model of governing science is problematic for many different reasons, but importantly it reveals a democratic deficit in our society, which is exemplified by the behind-closed-doors debate of the Napa meeting, which ultimately resulted in the moratorium in the USA – and also to the meetings of the UNESCO IBC that led to the recent reaffirmation of the moratorium. Whether it is scientists or bioethicists who meet behind closed doors, the governance model is the same – it reveals a framework for debating the ethics of science and technology that is skewed towards considering the supposed benefits and risks of a technology, without engaging the public on the technology's broader impact on society.

At a time when genome-editing technology is still in its infancy and its uses are yet to be determined, it is important to engage the public in a debate that moves beyond considerations of the use of the technology within the context of its application in the germline. It is also important to understand how debates around the issue are framed by particular economic, social and political factors in different countries.

While predictions about the evolution of the technology are always hazardous and often wrong, it is vital to capture what people think about the technology before scientists and policymakers set its parameters. To this end we are running a pilot survey to gather people's views on the new technology. The aim of the survey is to understand what members of the public think about genome editing: what it is and what it can do, where they get their sources of information, and where they think the ethical issues lie.

The survey aims to capture responses from as large a population as possible, including university and high-school students, industry experts, scientists, healthcare practitioners, patient groups, charity workers and others, from the UK, continental Europe, the USA and China. At this stage it is only a pilot survey, and respondents are being encouraged to share the survey with others through social-media forums and snowballing. Results from the survey will be published both online at WhatisBiotechnology.org and in media outlets.

Please participate in the debate and contribute to the pilot survey here and help us reach as wide and diverse an audience as possible. Comments and feedback are also welcome to Dr Lara Marks and Dr Silvia Camporesi

SOURCES & REFERENCES
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