Categories: Influencing Policy16 March 20166.4 min read

Editing the Debate

Date: 16/03/16
By Sarion Bowers

sissors.jpgWhat more powerful form of study of mankind could there be than to read our own instruction book? ”     Francis S. Collins on the completion of the draft human genome.

This year the Human Genome Project celebrates the 25th anniversary of its inception and the beginning of the attempt to read the entire human genome. Now, a quarter of a century on from reading those first letters, we are starting to edit the genome and in the process perhaps providing a new answer to Collins’ hypothetical question.

Scientists have been able to edit the genome for a few years, making changes to the DNA sequence to change genes, but it’s been a difficult and fiddly process, requiring skill and luck, and critically it was costly and time consuming. The development of a new technology called CRISPR/Cas has changed that. CRISPR/Cas is easy to use and it’s cheap. It can be easily targeted to any location in the genome and the desired change made on demand.

Editing the genome is a grand endeavour and such undertakings can polarise views. It is important then, that the discussions about how to govern and regulate genome editing reflect the real and valid concerns of both scientists and the public, but it is also important to avoid falling into a trap of over-hyping both the promise and the threat that genome editing offers. Promising too much can be as problematic as threatening too much. The most fearful critics suggest there could be eugenics, super-soldiers and genetic modifications rampant and out of control in the environment. The most ardent supporters propose a world where no-one will have to give birth to a child with a genetic defect ever again. Both sides should not be lightly dismissed, but when considering the pros and cons to these arguments it is prudent to take stock and consider the world as it already is.

Humans have been editing genomes since the dawn of the human race. We choose our partners based on attributes we find attractive, many of which are genetic. We have been selectively breeding crops and animals since the biblical era. We are a genetic map of our parents’ choices, and they of theirs and the world we live in is a genetic reflection of our comprehensive influence on our planet.

Sometimes in interfering with genetics, humankind has gone too far. Eugenics is never far away when discussing selecting genetic traits, and although it is comfortable to consign eugenics to dark periods of history that would be neglecting the decades of malign influence authorities have had on the reproductive choices of their minority and vulnerable citizens.

In Western society, we eat too much, drink too much and are too sedentary. We breathe polluted air and we sit out in the sun for too long. We know these things can cause mutations in our genomes and some of those mutations may lead to cancer and yet we still do it. To some, carefully targeted genome editing feels a moral chasm away from the lottery of random genomic alterations of the typical Western lifestyle.

New diseases and techniques mean that this issue must be explored, debated and questioned more than ever before.

tweezersIt is in this world that scientists, sociologists, lawyers, bioethicists and interested others are trying to understand what the impact of CRISPR/Cas may or should be. There are numerous ongoing initiatives looking to understand the implications of genome editing, and the Sanger Institute has been involved in many of them with our scientists, social scientists and policy specialists sitting on working groups, committees and expert panels.

To date, Pentao Liu provided expertise to the Hinxton Group and its Statement on Genome Editing  and Anna Middleton is sitting on a working group at the American Society of Human Genetics (ASHG). Bill Skarnes was on the organising committee of the International Summit on Human Gene Editing in Washington, and many more of our faculty have talked around the world about the benefits and potential that CRISPR offers.

Lastly, the Sanger Institute has set up a Society and Ethics Working Group to consider the ethical issues of genome editing and engage with the national and international debates on what is the appropriate governance for it. The working group has the Institute’s rich history of ground-breaking research to lean on, including its integral role in the Human Genome Project.

Perhaps the biggest attempt so far to debate the potential of genome editing was the International Summit held in Washington in December 2015, which I attended. The US National Academy of Sciences, the US National Academy of Medicine, the Chinese Academy of Sciences and the Royal Society gathered a range of expertise and experience to discuss the science, ethics and impact of genome editing.

Over three days, the summit covered a vast range of topics, from safety, to potential therapeutics, racism, eugenics, health inequalities, germline versus somatic therapy, the nature of family and the right to related children, therapeutic uses versus enhancement, the advantages and disadvantages of moratoria, regulation in different countries, the cultural aspects of in vitro fertilisation, and the merits of research. These issues are wide-ranging and challenging but critically many of them are not new.

Of the new ethical dilemmas perhaps the most difficult to tackle will be deciding what is a therapy and what is cosmetic. On the face of it, it is a simple question, and where a life will be saved the answer may be obvious. However, for non-fatal conditions, the definition of life-altering is subjective and treatment may not simply control or cure a disease but rather will leave a person with a genetically superior phenotype. The line between a cure and an enhancement is blurred. Many conditions result in the formation of communities around them, and in some cases, such as deafness, even become a lifestyle choice. “Curing” such conditions through genome editing risks alienating individuals and stigmatising these communities and challenges the reproductive choices of individual families.

What is clear from all the discussions is that the most considered issues are also the most moderate and mundane, for example: is genome editing safe? How often does CRISPR/Cas miss its target and edit the wrong place? Where is the line between clinical treatment and cosmetic procedure? Should genome editing only be used where it does not introduce inherited changes? Answers to these and other modest questions will form the basis of future governance and as they tease out the nuances of what is acceptable in our society they will provide the answer to questions about designer babies and the end of genetic disease.

Ultimately, genome editing offers potential and risk; there will be a diverse range of views on every ethical issue that arises and each country will adopt and accept genome editing in a way that reflects their own cultural sensibilities.

Sarion Bowers is the Research Policy Advisor at the Wellcome Trust Sanger Institute. She has a PhD in Biochemistry. Before joining the Institute she did postdoctoral fellowships in Leeds and Connecticut. She recently completed an MSc in Science and Technology Policy, in which she researched the adoption of genomics into the NHS.

Sarion will be on the panel discussing the future of genome editing at the Cambridge Science Festival on Thursday 17th March, 6:00-8:00pm at Murray Edwards College, Cambridge.

Related links: