Why plumbers and teachers should have a say on designer babies and genetically enhanced potatoes
IMAGE CREDIT: Illustration by Alice Mollon
Ethical and social implications of powerful DNA-altering technology are too important to be left to scientists and politicians, researchers find.
Designer babies, mutant mozzies and frankenfoods: these are the images that often spring to mind when people think of genome editing.
The practice – which alters an organism’s DNA in ways that could be inherited by subsequent generations – is both more complex and less dramatic than the popular tropes suggest.
However, its implications are so profound that a growing group of experts believe it is too important a matter to be left only to scientists, doctors and politicians.
Writing ‘Global Citizen Deliberation on Genome Editing‘ in the journal Science, 25 leading researchers from across the globe call for the creation of national and global “citizens’ assemblies”, made up of lay-people, tasked with considering the ethical and social impacts of this emerging science.
These implications are so important, believe researchers led by Professor John Dryzek, head of Australia’s Centre for Deliberative Democracy and Global Governance at the University of Canberra, they should be examined not just by those in the field, but by the general public: teachers, plumbers, butchers, bakers and candlestick-makers.
Dryzek and colleagues believe that citizens’ assemblies – groups of lay-people tasked with diving deep into the ethical and moral issues thrown up by genome editing – will provide a valuable guide for scientists, doctors and politicians around the world.
“The promise, perils and pitfalls of this emerging technology are so profound that the implications of how and why it is practised should not be left to experts”
Professor Dryzek
In the Science paper, the researchers say their proposed global assembly should comprise at least 100 people – none of whom would be scientists, policy-makers or activists working in the field.
The international meeting will take place after several national versions have been conducted. In the UK, this event is being funded and led by Professor Anna Middleton’s Wellcome Genome Campus Society and Ethics Research team.
Events in the US, Australia and China are also already planned and fully funded by international organisations Kettering Foundation, National Institutes of Health, the Australian Government Medical, and the Research Future Fund Genomics Health Futures Mission.
Projects in Belgium, France, Germany, Brazil and South Africa are also well advanced.
“The fact that they are made up of citizens with no history of activism on an issue means they are good at reflecting upon the relative weight of different values and principles,”
Professor Dryzek
“Think of how we trust juries in court cases to reach good judgements. Deliberation is a particularly good way to harness the wisdom of crowds, as it enables participants to piece together the different bits of information that they hold in constructive and considered fashion.”
Professor Dryzek
Citizen-based deliberations are not unusual, as recent plebiscites in Ireland and Australia illustrate. However, the global assembly would be significantly different.
“The issues to be discussed in this assembly are different from the types of issues examined in other forums of this nature – for example, whether same sex marriage should be legalised,”
Co-author Dianne Nicol, professor of law at the University of Tasmania.
“I don’t think the goal of the citizens’ assembly should be to answer questions of whether heritable genome editing should be prohibited globally. Rather, it should be about better understanding community concerns and expectations.”
Co-author Dianne Nicol, professor of law at the University of Tasmania.
It will also be about social justice, added Professor Baogang He, Chair of International Studies at Australia’s Deakin University.
“A global citizens’ assembly will help to develop moral and political regulation on genome editing experiments, and to ensure fair access to the technologies,”
“It will help global civil society guard against ill use of genome editing for the interest of a few.”
Professor Baogang He, Chair of International Studies at Australia’s Deakin University
“A global citizens’ assembly will help to develop moral and political regulation on genome editing experiments, and to ensure fair access to the technologies,”
“It will help global civil society guard against ill use of genome editing for the interest of a few.”
Professor Baogang He, Chair of International Studies at Australia’s Deakin University
Co-author Herve Chneiweiss, Director of UNESCO’s International Bioethics Committee and member of the WHO Expert Advisory Committee on the Governance of Human Genome Editing, said the selection process for the global assembly must reflect differences rather than geopolitics.
“Too many people would make a real deliberation impossible, not enough should make it inefficient,”
“Our goal should be to be representative. Thus it is not a Senate where each state would get one vote, whatever the number of its population. The ‘100’ should represent the diversity of cultures and origins.”
Herve Chneiweiss, Director of UNESCOs International Bioethics Committee
Another co-author, genetic counsellor Professor Anna Middleton from Wellcome Genome Campus, Society and Ethics Research, in the UK, said new gene-altering practices will eventually impact the whole world.
“For technologies such as genome editing it is crucial to understand social impact,”
“The whole globe has the potential to be affected by this, so we must seek representation from as many public audiences as possible across the world.”
Professor Anna Middleton, Head of Wellcome Genome Campus, Society and Ethics Research
Professor Dryzek said funding for the global assembly was already well advanced, with funders including the Australian Research Council already on board. He hoped the interest generated by the Science paper would provide a pathway to more.
The planning process and eventually the assembly itself is being recorded by Emmy Award-winning Australian documentary-makers Genepool Productions.
“This is not about providing a speakers platform, rather a thinkers pool,”
“The researchers have come up with a powerful and people-focussed approach to examining a world-changing technology. Capturing this world-first event on film, I hope, will preserve the historic occasion, amplify the global conversation, and provide a template for citizen deliberation on other, equally important matters.”
Sonya Pemberton, Genepool Creative Director and Co-Author
Authors: John S. Dryzek1, Dianne Nicol2, Simon Niemeyer1, Sonya Pemberton3, Nicole Curato1, André Bächtiger4, Philip Batterham5, Bjørn Bedsted6, Simon Burall7, Michael Burgess8, Gaetan Burgio9, Yurij Castelfranchi10, Hervé Chneiweiss11, George Church12, Merlin Crossley13, Jantina de Vries14, Mahmud Farooque15, Marit Hammond16, Baogang He17, Ricardo Mendonça10, Jennifer Merchant18, Anna Middleton19, John Rasko20, Ine Van Hoyweghen21, Antoine Vergne22
Affiliations:
1 University of Canberra, Canberra, Australia
2 University of Tasmania, Hobart, Australia
3 Genepool Productions, Melbourne, Australia
4 University of Stuttgart, Stuttgart, Germany
5 University of Melbourne, Melbourne, Australia
6 Danish Board of Technology, Copenhagen, Denmark
7 Involve, London, UK
8 University of British Columbia, Vancouver, Canada
9 Australian National University, Canberra, Australia
10 Federal University of of Minas Gerais, Belo Horizonte, Brazil
11 Sorbonne Universite, Paris, France
12 Harvard University, Cambridge, USA
13 University of New South Wales, Sydney, Australia
14 University of Cape Town, Cape Town, South Africa
15 Arizona State University, Washington DC, USA
16 Keele University, Keele, UK
17 Deakin University, Melbourne, Australia
18 Universite Paris 2, Paris, France
19 Wellcome Genome Campus, Faculty of Education, University of Cambridge, Cambridge, UK
20 Department of Cell and Molecular Rherapies, Prince Alfred Hospital; Faculty of Medicine and Health, University of Sydney, Sydney, Australia
21 KU Leuven, Leuven, Belgium
22 Missions Publique, Paris France