Join the debate around genome editing

A new tool for genome editing offers genetic engineering on an unprecedented scale. It has triggered a major bioethical debate, and you are invited to join.

Lara Marks Silvia Camporesi
15 October 2015
Jennifer Doudna at TEDGlobal London. James Duncan Davidson-TED/Flickr. Some rights reserved.

Jennifer Doudna at TEDGlobal London. James Duncan Davidson-TED/Flickr. Some rights reserved.If you are a molecular biologist, you may remember Asilomar. It was the place chosen in 1975 by a group of elite biologists —including some future Nobel prize winners such as Paul Berg and David Baltimore — to hold a conference debating the risks of experiments with a newly developed genetic engineering technique known as recombinant DNA. Their aim was to address fears that such work could potentially create dangerous pathogens. The Asilomar conference has gained an almost mythical status among American scientists who view it as a model of scientific responsibility and self-regulation of science by scientists.

But science and technology scholars have challenged this view. They argue that the aims and outcome of the Asilomar conference confined the regulation of biotechnology within the professional boundaries of science, thereby avoiding external regulation and tougher questions about the implications of such technology for society as a whole. The conference's model of “responsible self-regulation” of science has been challenged on the grounds that it is undemocratic.

Four decades on, the Asilomar conference is being cited by US scientists debating the future applications of a controversial new tool for genome editing. 

The new tool under debate is known as CRISPR/Cas9. It differs from previous genetic engineering techniques in that it allows for the introduction or removal of more than one gene at a time. This makes it possible to manipulate many different genes in a cell line, plant or animal, very quickly, reducing the process from a number of years to a matter of weeks. It is also much more flexible than previous techniques and can be used across different species. The technique is very cheap, costing as little as 30 dollars.

Both the efficiency and low cost of CRISPR/Cas9 have opened up the possibility of carrying out genetic engineering on an unprecedented scale. The technique is already being explored for a wide range of applications, in fields ranging from agriculture through to human health. It is being deployed, for example, in the development of gene therapy to treat cystic fibrosis, to create humanised animal models to produce compatible organs for transplant into patients, and to develop disease-resistant crops.

In April 2015, a Chinese group reported the first application of CRISPR/Cas9 to (non-viable) human embryos and concluded that CRISPR/Cas9 could be an effective tool for cleaving the endogenous 'beta-globin gene' (HBB) which could pave the way to the development of gene therapy to treat conditions such as thalassemia. The goal of the experiment was to establish the first proof of principle of CRISPR/Cas9 in vitro, not to implant the embryos for clinical applications. Yet, this experiment to establish the proof of principle in human embryos has triggered a major bioethical debate about where the technology should be used.

Flickr/RobertBa Ars Electronica. Some rights reserved.

Flickr/RobertBa Ars Electronica. Some rights reserved.The debate has become particularly intense in the US, sparked by a letter published by a group of scientists in the prestigious journal Science. The letter calls for a world-wide moratorium on the applications of the technology to human embryos. Authors of the letter include Jennifer Doudna, a key pioneer in the development of CRISPR/Cas9, and some of those who organised the Asilomar Conference 40 years ago, including David Baltimore and Paul Berg. A similar letter shortly followed to the journal Nature.

It is interesting to see that the very same self-regulation model of Asilomar is reiterated in a call for a moratorium on embryonic applications of the technology (the germ-line). This might be a means to appease the public and prevent a backlash against its use in other areas said to hold great potential:In our view, genome editing in human embryos using current technologies could have unpredictable effects on future generations. This makes it dangerous and ethically unacceptable. Such research could be exploited for non-therapeutic modifications. We are concerned that a public outcry about such an ethical breach could hinder a promising area of therapeutic development, namely making genetic changes that cannot be inherited”.

Following the publication of this letter, the National Institutes of Health indicated it will not fund any research that uses genome editing tools such as CRISPR/Cas9 in human embryos. The crystallised memory of the Asilomar Conference could now drive the future regulation of CRISPR/Cas9.

The Asilomar model of governing science is problematic for many different reasons, and reveals a democratic deficit in our society. One of the problems with the Asilomar conference is that the framework it launched for debating the ethics of science and technology has tended to be skewed towards considering the supposed benefits and risks of a technology as imagined by scientists, with little input from others. There is also a tendency to frame the debate as having just two opposing sides: on the one hand the technology holds great promise for the future; on the other, the technology poses serious risks. What is often missing from the debate are questions such as, ‘why this technology, now (instead of others)?’, ‘how does it impact on the future?’ and ‘how does it relate to our concept of ‘the good life?’

The Asilomar model of responsible self-regulation of science behind closed doors without a broader involvement of society has in part gained popularity because it provides an easy means to establish some precautionary fences in advance to limit a technological backlash later on. Decisions on the extent to which we should edit the human or non-human genome, however, must not be taken behind closed doors.

The public has been portrayed as not understanding science, or being in the way of science’s progress by creating unwarranted fears. The public is said to need “education”, on the verge of a dangerous “outcry”.

This debate is being driven from the top down

CRISPR modified rice. Penn State/Flickr. Some rights reserved

CRISPR modified rice. Penn State/Flickr. Some rights reserved.At present, the debate on genome editing is still fluid and evolving, but already it seems to be driven from the top down. In line with the recommendations of the letter in Science (and a similar letter in the journal Nature), the National Academy of Sciences and the National Academy of Medicine formed an advisory group in June 2015 with the goal “to identify and gather information and advice from the scientific and medical communities that will enable the academies to guide and inform researchers, clinicians, policymakers and the public.” Some of the members of the advisory group are members of the original Asilomar conference, including Baltimore and Berg. The group will convene in early December with an international summit in Washington, DC.

As pointed out by the American science and technology scholars Sheila Jasanoff, Krishanu Sana and J. Benjamin Hurlbut, “the very notion of a summit suggests that a view from the mountaintop [i.e. the advisory board meeting of the NAS] will provide an authoritative image of the lay of the land, to be charted once and for all through ethics or regulation.” Overall the action implies that experts should be allowed to “retreat into secluded spaces to define the parameters of public debate”.

Meanwhile in Britain, the Nuffield Council on Bioethics launched its own working group in July 2015 to look into the institutional, national and international policies and provisions relevant to genome editing. Earlier this year, Jonathan Montgomery, chair of the Nuffield Council on Bioethics, published a letter to the Guardian writing that the genome editing debate should not be restricted “only among scientists, however well-informed or well-intentioned they are”. The Nuffield Council convened its first meeting in September 2015 and public engagement activities are expected to follow in 2016.

Against this background, it should be noted that the US Presidential Commission for the Study of Bioethical Issues, which has the mandate from President Obama to deliberate on ethical issues, including this one, has remained silent on the matter. The historian of medicine, Nathaniel Comfort, has pointed out that the CRISPR/Cas9 debate in the US falls along political lines of conservatives and liberals. If this reading is correct, then the direction of the CRISPR/Cas9 debate in the US is strictly linked to the 2016 Presidential elections. This may be why President Obama, who is nearing the end of his mandate and is working on building the legacy of his presidency, is not keen to engage with this thorny debate around genome editing, and would rather leave it to his successor in the White House.

The strategic framing of the debate with a focus on the germ-line applications of the technology has both policy and political implications that should be made visible. The emphasis on the germ-line applications of the technology is a way to elicit a public response and colours the debate in a certain way. For opponents of the technology it provides justification for a moratorium. This is done by invoking the dystopic vision of a eugenics future with designer babies. Only a few days ago, the UNESCO International Bioethics Committee (another instance of a debate happening behind closed doors among “experts”) reiterated the NIH ban on applications of CRISPR/Cas9 technologies to human embryos, for fear of a future of “designer babies” and a resurgence of eugenics. Countering this is the utopian vision being pushed by those who favour the technology who argue it holds the promise to free the world of certain diseases and possibly ageing.

Let's open the debate to the public

Shutterstock/Lightspring. All rights reserved.

Shutterstock/Lightspring. All rights reserved.Such utopian and dystopian refrains are common to debates about new scientific and technological innovations and need to be resisted. Critically, they prevent a wider discussion about other social and political issues around access to the technology. We need to be thinking more about who will benefit most from the potential benefits of the technology.

Similar promises were made, for example, in the context of synthetic biology, and nanotechnology before that. Synthetic biology was notably heralded as a means to eliminate malaria with a semi-synthetic drug known as arthemisin. The scientists portraying such a rosy future, however, did not take into account the social context in which the new synthetic molecule (which is a construct from a compound already used in anti-malaria therapies) had to be applied. Nor did it take into account the fact that the new synthetic form of the drug will not be cheaper than the existing source so will do little to alleviate shortages of the drug which in fact — at best — plays a relatively small part, among the multitude of factors, that determine whether or not people suffer and die from malaria.

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

The pilot survey also aims to capture what images, ideas or associations people have when they think about CRISPR/Cas9. Capturing this aspect of the public response is important as imagined futures can shape the boundaries of the ethical debate and the thinking of policy-makers. As the historian of science and technology Alfred Nordmann puts it: “ethical concern is a scarce resource and must not be squandered on incredible futures, especially when they distract from on-going developments that demand our attention”.

The intention is to capture responses from as large a population as possible, including university students, school students, industry experts, scientists, healthcare practitioners, patient groups, charity workers, from the UK, continental Europe, US, and China. Respondents are being encouraged to participate through social media forums and asking friends to participate. Results from the survey will be published both online at WhatisBiotechnology.org and through other media outlets.

We invite you to contribute to the pilot survey here.

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