Questions like this once seemed confined to the pages of science fiction. But they have now become a realistic possibility, thanks to rapid developments in genetic technologies over the past 70 years. Since the discovery of the structure of DNA in the 1950s, geneticists have made new discoveries at a breathtaking rate. In 1982, the first drug (insulin to treat diabetes) was produced using genetic engineering, followed by the first trials of gene therapy in humans in 1990. At the same time, sequencing a human genome has become simpler than ever. The original Human Genome Project took 13 years and cost $3 billion. Today the same process takes three days and costs less than $1,000. But before we go any further, let’s see what you already know about genetics.
170,000 The number of people worldwide thought to have had their genome sequenced for medical research and diagnosis in 2017
The answer is false!
It stands for deoxyribonucleic acid and it carries genetic information. next question
The answer is true!
Genes contain the instructions to make specific molecules, usually proteins, that determine characteristics such as eye and hair colour. next question
A genome is a collection of four or five genes that work together to make complex characteristics such as intelligence.
true falseThe answer is false!
A genome is all of an organism’s DNA, including all of its genes. The human genome contains around 20,000 protein-coding genes. next question
The answer is true!
Your genetic code is based on four letters (A, T, C, G). The specific order that these letters are arranged in carries the instructions that make us distinct from other species as well as from each other. next question
Genome editing techniques such as CRISPR allow you to replace faulty genes with different or healthy genes.
true falseThe answer is true!
Genome editing tools like CRISPR have been likened to a 'find and replace' tool for specific sequences of DNA, although the reality of dealing with DNA is more complex than word processing. next question
If you use genome editing on a human, then all of the changes you make are inherited by their children.
true falseThe answer is false.
Although there is early-stage research into making changes that would be inherited by subsequent generations, all current genome editing procedures involving humans do not result in changes that would be inherited. my score
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Rapid scientific developments are not uncommon. Less than 70 years after the Wright brothers completed the first successful powered flight, three NASA astronauts flew to the Moon - 385,000 kilometres away. However, the speed of recent developments in genetic science has thrown up a range of economic, environmental and ethical issues that society is still attempting to process. The fact that your genome can now be sequenced safely and relatively quickly and cheaply means that the difficulty of carrying out related genetic procedures - for example genetic testing or genome editing - is also reduced. It also opens up the technology to a far wider range of individuals and organisations. So how do you feel about this? How do you think using these technologies might change society? Here we will explore some of the key genetic technologies and probe some of the dilemmas and debates around their use.
2003 The Human Genome Project, begun in 1990, was completed, having sequenced 99% of the 3.2 billion letters (A, C, G, T) that make up human DNA.
70% In a recent public dialogue commissioned by the Royal Society, 70% of people said they had a general interest in genetic technologies.
They have a variety of uses, including diagnosing rare diseases and commercial services that provide you with medical information or family history. But a rapidly developing area is analysing the DNA of large numbers of people to improve our understanding of what effects our genes have on our lives. This could help develop treatments that are designed to work with our individual genetic makeups.
approve of the idea of using genome sequencing in humans as a way of identifying the risk of life-threatening diseases
‘Do you agree that genome editing should be used in humans for cosmetic reasons eg changing a person’s eye or hair colour?’
AGREE DISAGREE DON’T KNOWof people agree with you, saying that genome editing should be used in humans for cosmetic purposes.*
of people agree with you, saying that genome editing should not be used in humans for cosmetic purposes.*
of people agree with you, saying that they don't know if genome editing should be used in humans for cosmetic purposes.*
*Royal Society public dialogue, 2018
‘[Genetic testing could] help to remove inequality, because if you're born with a genetic disease, you can't do anything about it. I think if there's a shift to empower people, [. ] that's a benefit.’ (Dialogue participant, London)
‘If we have too many people, we'd have to lower our standards of living. If everybody lives another five years we'd run out of space and food, resources’ (Dialogue participant, London)
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Doctors are not only capable of testing for genetic disorders. Doctors hope to use genome editing to ‘find and replace’ genes, either replacing faulty genes with healthy ones, or changing genes to make them behave differently.
This animation explains more about what’s involved.
For some people, this level of genetic intervention raises concerns. What if there are unforeseen side effects? What if the technology gets into the wrong hands?
Let’s take a look at the story of a British baby called Layla to put some of these questions into a real-life context.
Leukaemia is the most common cancer in children under the age of five. In the UK over 85% of affected children survive for five years or more after their cancer is diagnosed. However in 2015, doctors at Great Ormond Street Hospital, London were treating a baby called Layla Richards, whose leukaemia had not responded to any of the conventional treatments.
Knowing that Layla would die without treatment, they turned to an emerging technique which involves extracting a patient’s own T-cells (an immune cell that targets cancers) and genome editing them to make them more effective at targeting leukaemia. These T-cells are then returned into the patient’s body.
Layla Richards did not have enough of her own T-cells, so doctors used T-cells from a donor. This meant that as well as using genome editing to attack the cancer, doctors also carried out further editing to ensure that the donor T-cells wouldn’t be rejected by Layla’s immune system. So there were two levels of genome editing - an unprecedented and pioneering achievement.
The treatment worked. Two years on, Layla Richards is healthy and her cancer hasn’t returned. Layla’s treatment involved somatic cells – which means that the genetic changes in her DNA won’t be inherited by her children. She will continue to be monitored to check for any complications. If further trials of this procedure are successful, then the treatment could become more widely available in the future.
agree with using genome editing in patients as a way of curing an otherwise incurable life threatening disease.
believe that genome editing should be used to enhance human abilities (eg to increase a person’s strength)
CLICK TO FLIP TILE Genome editing has become a powerful technique for cancer scientists because it allows them to genetically manipulate cancer cells for laboratory tests, bringing results much sooner.
CLICK TO FLIP TILECLICK TO FLIP TILE In 2017, genome editing was used to eliminate HIV DNA in mice. This effectively stops the virus from replicating itself.
CLICK TO FLIP TILECLICK TO FLIP TILE Recent tests have suggested that genome editing may be able to restore the production of the dystrophin protein in cultured muscle cells, offering hope to thousands of muscular dystrophy sufferers.
There are a wide range of opinions on genome editing. For some people and some applications, it is a step too far: we are ‘playing God’ and crossing an ethical boundary. It also raises concerns about affordability (will it be freely available to all?) and regulation (who will control its use?). For others, the benefits outweigh the risks, particularly for those suffering from otherwise incurable diseases.
‘I think the world that we live in faces significant challenges. There’s challenges around food, around medicines, around treating people. Those challenges I don’t think can be answered with conventional science anymore.’ (Dialogue participant, Norwich)
‘I think it's unacceptable. You're going to have a generation of people who have never had to accommodate or, never had to think about anything, any tragedy or tragic situation, what will that do for society? It may make people less compassionate.’ (Dialogue participant, London)
But it’s not just the genomes of children and adults that can be edited using this technology. It is also possible to edit the genomes of embryos.
Because this editing is done at the embryonic level, it means that the change would be permanent, and may be inherited, a process known as germline editing.
It is currently illegal in the UK and US to implant a genetically altered embryo into a woman’s womb, which means that this technique could not be used unless the law is changed. Scientists have said much better evidence on whether the treatment is safe and effective, as well as inclusive public debate, is required before any change in the law should be considered.
Those in favour of using genome editing to treat genetic diseases in embryos argue that it diminishes suffering, and could reduce costs to the wider health system. Those opposed believe that it will reduce respect for difference and increase pressure on groups with characteristics that are labelled as a ‘disorder’.
Birth of Louise Brown, the first IVF baby. At the time people feared IVF would lead to ‘designer babies’, but it is now widely accepted.
IVF babies have been born in the UK
‘It’s easy for those unaffected by genetic diseases to dismiss scientific progress as a step towards a future in which we start selecting a criterion of eye or hair colour from a design-your-own-baby catalogue. But for people like me, affected by an incurable genetic disease that caused me to go blind, scientific advancements into gene editing and mitochondrial replacement therapy offer nothing but hope. If there is any chance of potentially saving yourself or your baby from illness, don’t tell me you wouldn’t take the opportunity.’
Alex Lee, a freelance writer with interests in technology, culture and politics, August 2017
‘. even if changes to the germ-line turn out to be safe, the underlying ethical concerns of scope and scale that genome editing brings will remain. If a technique can be used widely and efficiently, without careful oversight governing its use, it can readily become a new norm or an expectation. Those unable to access the desired genetic alterations, be they humans with diseases, humans without enhanced genetic characteristics, or farmers without genetically modified animals or crops, may all find themselves gravely and unfairly disadvantaged.’
Anthony Wrigley and Ainsley Newson, both academics specialising in ethics, March 2015
Do you believe that genome editing should be used in the clinic to treat embryos likely to develop genetic disease, rather than just for research? For some, it is unacceptable because there are alternative options for parents who do not wish to pass an inherited genetic condition down to their children. In this argument, genome editing should only be used as a last resort.
These alternative options are:
August 2017
CRISPR is used in a research effort to remove a genetic predisposition to heart disease in human embryos.
September 2017
CRISPR is used for the first time by researchers to understand the role of a gene in the early development of embryos.
The simple fact is that society is still making up its mind about genetic technologies. We all have a role to play in deciding how, where and when they should be used. The laws and regulations around genetic technologies will inevitably change as the technology develops further and we will need to work out as a society what we find ethically acceptable.
When the Royal Society carried out a consultation exercise in 2017, there was widespread agreement about the need for effective and consistent regulation.
Should there be a global regulatory framework for genetic technologies?
Based on the Royal Society's public dialogue, there is already a lot of common ground. Most people would agree that genetic technologies have the potential to cure and control disease. There also appears to be agreement on who should be developing these technologies and by whom they should be regulated.
The next step is more complicated: working out how much and how far that technology should be developed and controlled.
This is not just an abstract question. As we grow older, we are all likely to be placed in situations where genetic technologies will offer us or our loved ones an enhanced quality of life. We may find our opinions sharpening or changing in these circumstances. Until then, the Royal Society is continuing to share news and encourage discussions about genetic technologies. Please keep taking part in the conversation on #genetech or find out more about our work in this area and help us to shape the future.
*Qualitative data from workshop participants discussing who they trusted to work on genetic technologies. Quantitative data from survey participants on first choice preferences for who they trust to inform and advise on genetic technologies as follows: Universities, academics, scientists and researchers – 43%; Business working on or funding research 16%; government bodies/policy makers 14%; Regulatory organisations 12%; Charities and campaigning organisations 9%; None of the above 6%
Reading, interpreting and editing genetic material is getting faster, cheaper, and more precise. Using the power of genetic technologies in living things has enormous implications and raises important ethical issues for discussion, so it is important they are used appropriately and society is involved in the big decisions about their use.
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The Royal Society is a Fellowship of many of the world's most eminent scientists and is the oldest scientific academy in continuous existence.
