Survey Results: Genome editing

Comments + observations

Respondents were given the opportunity to add comments about aspects of CRISPR. The following is a selection of those comments. To add context the location of the respondent is also given where it is known. The role of the respondent in responding to the survey is also given. Where a respondent gave more than three roles a random selection of three of those roles is provided.

Do you have any other contributions to make to the debate about genome editing?

I think as scientists, the conversation about gene editing needs to be carefully worded as not to scare the public and politicians. I think research using gene editing has to be focused on what will its uses be. It may not be good to perform research just for the sake of research if the use is not clear. I feel that biomedical research is an extension of medicine, so first, do no harm. Overall, if gene editing of human embryos could potential cause problems with embryo development and many attempts must be made for perfection, experiments should not be done. For the public, the conversation should be focused on how gene editing could be used to fix diseases in born people especially when other alternatives are not available.

United States

Industry should be a partner, not the lead actor, in the development of uses for CRISPR. Scientists and ethicists should be the lead actors.

United KingdomAcademic researcherPolicy professionalStudent

Happy that we are having this debate, though not sure why we are having it again. I am afraid it belongs to a pre-emptive campaign of the biotech-politics complex to avoid public backlashes against a technology that might prove profitable (especially the hype surrounding it and the cycle of expectations management-investments that goes with it). The entire debate seems to me to be little more than tokenistic, it will just lend legitimacy to technological-industrial decisions that have been already taken. Not sure how to tackle this issue if we remain within the ELSI-bioethics or the participation-STS approaches to technology governance. Probably the spread of pseudo-science and conspiracy theories about it will stir a more genuine debate,or at least one that is radically more open than the one initiated by scientists and policy makers. But do we really want a more open debate?

United KingdomAcademic researcher

I worry that uninformed ethical quandaries will get in the way of what could be a truly revolutionary means of curing diseases (although what we do with an extremely healthy population that won't die is another problem), but that shouldn't detract from the importance of the debate around cosmetic treatments and affordability.

United KingdomGeneral interest

I'm worried about the fact that, apart from a few clear single-gene diseases, many of the gene-disease associations found so far are rather shaky and often end up failing replication. It's important to be very cautious about possible associations. I'm also worried that we don't yet have a good model for many gene-environment interactions and that genetics and sociology are almost entirely isolated from one another as academic disciplines. I'm worried that geneticists aren't always well acquainted with political writing about disability and gender.

United KingdomCharity/advocacy group workerPatientResearch professional

The public understanding of genome editing is an interesting topic that I am not too keyed up on, however I imagine that the communication of developments in newspapers will be typically negative. Talk of 'Designer Babies' and 'Frankenhumans' will most likely accompany even the most minor developments in genome editing, predisposing the population towards distrust of the technique. I may be overly cynical, but I imagine the debate about genome editing will be protracted and, for the time being, based on unlikely abstractions and hype/misinformation that confound any kind of constructive bioethical discussion.

Student

It's a next step in human evolution. Let it proceed but regulate appropriately. Same with artificial intelligence development.

United StatesStudent

There's a lot of work to be done before we can understand the effects of genome editing before it should be used in the general public. There are a lot of ethical barriers that will need to be overcome before it's accepted but we cannot let the opinions of the uniformed decide whether or not this research should be done.

United StatesStudent

The CRISPR/Cas9 is not very stable, so far there are still a lot of problems when using this method to do the genome editing. In China, there is no policy or regulation about how to use the human embryo to do the genome editing research. At this stage, without a serious review by the academic board and ethics committee, it might lead to an abuse which will create biosafety and bioethics problems.

ChinaAcademic researcher

This technology will benefit a lot for the human health or survival, but it should be under a very strict regulation, policy or law to ensure its application.

ChinaAcademic researcher

We have the tools in our hands, tools provided mostly by nature itself (the CRISPR mechanisms is a natural immunity system of bacteria and archea). The question we have to think and answer very carefully is how we are going to use all these tools and which directions we sould follow to provide something useful for the society. In my opinion, vaccine development is a scientific field where these tools can be used to provide something that is actually useful for the world as a whole, not just the scientific community.

FranceStudent

I'm unsure whether the debate around CRISPR/Cas9 needs to be qualitatively different from the long standing debate around genome editing in general. We've been able to alter genomes for quite some time now, what's different is the speed in which this can be done - so this might impact on what people will want to do with it. Also, generally there is too little focus on off-target effects which are known to occur frequently with this new technology.

United KingdomAcademic researcher

We cannot restrict a potentially 'game changing' technology simply because 'someone' may misuse it. They will anyway.

United KingdomAcademic researcherResearch professional

I think this technology should be highly regulated, not forbidden. Talking and raising ethical concerns about the applications will strengthen a moral/ethical application of these technologies, for both public and private sectors.

United KingdomAcademic researcher

Scientists are human and they make many mistakes. Changing the genome would be big mistake! Some will try this for several reasons, such as fame, many etc.......

United KingdomAcademic researcher

Until there is a better general understanding of the frequency of off-target effects of CRISPR (and other genome editing techniques), and of the effects of the inherent genotoxic stress of these techniques on tissues (particularly embryonic), genome editing is likely to be highly restricted in applicability for clinical use. While less convenient than CRISPR-Cas9, other genome editing techniques have existed for many years; the fact that these have not already made their way into clinical use suggests that genome editing will be of limited use for clinical applications.

United KingdomStudent

Genome editing seems like a waste of money compared to funding universal healthcare efforts. We attribute too many environmental factors to our genes in order to come up with "precision medicine", but we could just solve the environmental factors first and see what's left for genetics to deal with after raising the floor of human health and well-being for millions. It seems like much of this research is inspired by attempts to make a select few people's lives slightly better--but those people have already dealt with big health impacts like housing, food, basic healthcare, and are now seeking specialized treatments. Improving a select few's health shouldn't come at the cost of failing to fund basic efforts. This debate can't happen when marketing hype holds more water and gets more media attention than a careful consideration and democratic shaping of the goals of technology for our global society.

United StatesAcademic researcherCharity/advocacy group workerPolicy professional

While governments might debate taking action to regulate genomic engineering in some way, I think it is going to be very difficult to do. Research has shown that CRISPR systems are abundant in nature, and it is going to be close to impossible to keep people from working with RNA-guided nucleases, no matter what our ethical concerns might be.

SwitzerlandAcademic researcher

I don't think anyone can get this genie back in the bottle - and regulation will not be universal. Regulation will be very difficult to enforce, world-wide.

United KingdomAcademic researcherOther

Great power comes with greater responsibility, so we should use it wisely by taking time to understand the nature of alterations made to the genome as it has a life long result, and basically the person's life.

BangladeshStudent

UK regulations do not allow genome editing in viable embryos currently; this is unlikely to change unless for very specific purposes. it would be practically impossible to edit a genome in order to design babies since traits like eye colour, hair colur, intelligence, etc are influenced by many genes and are not yet understood, so this idea really is science fiction.

United KingdomStudent

The potential is excellent, but the risks are enormous. I think the media often simplifies what the process involves.

AustraliaStudent

Since this technology is dealing with the fine print of human biology, precision and reliability of the technology should be made public so that people know that they may not be walking into something which they may regret intensely if they so chose to. Cutting and pasting simply does not cut it when talking about modifying a person's very genome structure, and may have unknown consequences in the long-term. Low-cost better not mean cost-cutting either, as patients who need this should have it when it is certain that it may help them, although this does not necessarily mean that it should be delayed until perfection comes, as perfection simply isn't attainable. Scientists, testers,stakeholders and the public should take a moderate approach and not speed the process up too much, only pushing it forward if they are all confident enough that the process has matured enough to be mass-used. Speaking about awareness is completely ineffective unless all those who speak are truly aware.

MalaysiaAcademic researcherStudent

I believe genome editing is still in its infancy and we still have a long way to go before it becomes a serious problem. I think everyone must be open to the idea of genome editing if not support it, for as of today, the pros far outweigh the cons.

IndiaStudent

Basically, I think that gene editing is a good thing that will allow biology to be used similarly to engineering. However, I think that human gene editing should wait until, if ever, it is possible to edit the DNA of an adult who is fully capable of choosing what they're really doing. I don't know if it's ethical to decide someone else genetics for them.

United StatesOtherStudent

Need more public outreach.

United StatesStudent

As is so often, the answer lies in the middle ground. The space between the platforms constructed by individuals with extreme views. This technology offers so much potential it should not be blocked from use, but intelligent, informed regulation should be implemented to control its applications.

AustraliaStudent

I had to have a quick look up of the differences between genetic modification and genome editing - I am given to believe that genome editing would be very small changes in the base order of the DNA rather than larger portions of DNA being changed or coming from another species with a desirable trait. From this I am writing most of my answers with the belief that the risks of GM and GE would be very similar, as would the applications, but that in GE it would be more easily monitored and controlled. I think that many people would do what I did to begin with and assume that these are one and the same, therefore when writing information to the public an explanation of the differences would probably be useful, as well as explanations of the precautions taken to prevent negative effects. The similarities between genome editing and GM are likely to mean that many people have a negative response to genome editing, but the applications could be spectacular. I am still very much unsure of where I draw the line ethically in terms of genome editing to theoretically improve the human race but I hope to get more of an insight into the technology to make an informed decision.

United KingdomStudent

Should we be examining how the medical industry fits together, drug developments versus research into gene editing?

United KingdomGeneral interest

I don't see much benefit to declarations calling for a moratorium on either research or clinical applications. I think there is much to learn via basic research and it should be allowed to proceed in places that allow research with human embryos. This research could provide an invaluable source of data to learn more about the safety of gene-editing technologies. Having appropriate oversight in place that requires review and approval of clinical applications leaves you at the same endpoint as a moratorium, i.e., the technology is not (yet) ready for use in humans. A focus on appropriate regulation/oversight seems to also provide more opportunities to build a more robust understanding of the technology, and refine the oversight structures that would ultimately be required for appropriate use in any clinical setting. For what it's worth, I'm not sure that clinical applications will ever be justified (though I remain opposed to a moratorium). I'm a bit skeptical about the benefits attributable to clinical applications for treating disease, as other options will typically exist. (selecting other embryos, donated embryos, adoption). There's a better argument to be made for enhancements like disease resistance, but these will be harder to figure out and harder to sell.

United StatesAcademic researcher

A strict line should be enforced between the application of this technique to research and to a clinical setting - regulatory bodies should include national (e.g. HFEA in the UK) but also international (where UNESCO has an important role to play).

United KingdomStudent

In informing the public about genome editing, it is important to not only talk about the scientific aspects of the issue, but also to address value aspects. In this respect more work needs to be done, e.g. in public debates and hearings.

GermanyAcademic researcher

As with any new technology (mitochondrial DNA transfer, non-invasive prenatal testing etc etc) just because it is challenging, disruptive and raises ethical issues, does not mean we should shy away from using it. There needs to be oversight from appropriate bodies and clear guidelines developed by experts in the field. It is also essential that there is good, informed, non-sensationalized journalism so that the public are clear about the benefits and potential limitations of this technology.

United KingdomAcademic researcherCharity/advocacy group worker

Policy should come from the public, not enforced on the public. Extremely important to have open and anonymous forums like this. The hyperbolic assertions of the media in these matters are often very unhelpful in ensuring that the first impression of the technology in the public is one of fear. There needs to be unbiased education led by the public - they ask the questions they want to know the answers to - in an open (and un-pressurized) discussion with scientific community.

United KingdomStudent

We should be careful about the consequences of such modifications, a little change in the genome could cause other problems to appear.

GermanyStudent

Although agreeing in the need for stronger regulations, I believe that convincing investigators to join the final decision (moratorium or more research needed) whatever it might be would be more effective than coercive laws, specially in a global world such as that of science.

SpainAcademic researcher

Only that I feel remarkably ignorant on the subject and wish the press would report the facts rather than sensationalise.

GreeceStudent

Obtaining public confidence probably requires government to set clear incremental steps for the areas in which the techniques can be applied, proceeding from one to the next only as each step achieves clear benefits that the public recognises.

GreeceGeneral interest

I think it's a very promising technology, but I'm concerned that issues of increased longevity and proliferation of genetic diseases, along with overpopulation, are legitimised.

Academic researcherPolicy professional

Genome editing is to be manipulated with the required wisdom, something that is utterly absent from commercial entities. That's why I am personally against the commercial use of GMO in crops: as perfectly illustrated by the recent VW scandal, commercial entities of that scale only care about their immediate, short term (and sometimes medium term) benefit. Giving them such a powerful and dangerous new toy is not a good idea.

BelgiumPatientPatient's relativeOther

I think it's important to consider the social issues involved in the possible application of this biotechnology.

BrazilAcademic researcher

As a long term medical professional and bioethicist, I think we in science/medicine demonstrate a long history of underemphasizing and underestimating risk and harm of intervention. We always tend to think to do something is always better than to do nothing. Many times by far the best path is to do nothing, and by this I mean mainly in previously healthy 'normal' individuals/situations.

United StatesMedical professionalOther

There are at least two questions which I feel are missing in the debate: (i) does the debate further trigger a gene-centric view on disease/health which is already overemphasizing a rather simplified idea of the genotype-phenotype relationship; (ii)is 'editing' the genome really causing a 'new' dimension of ethics debate or could we link to long-standing therapies around bioengineered organisms, gene therapy, humanised tissues and organs? I answered three of your questions with '2' (strongly disagree) because I think that these questions cannot be answered now when we have only just started to understand the potential of the technology, and not in general (for a more detailed survey different applications should be specified). I also feel that the development of the technology is currently too rapid, being pushed already by investors.

AustriaAcademic researcherResearch professional

I'm currently undergoing IVF as an older woman. I hope that this kind of technology will help people having difficulty producing euploid embryos. Many try for years, often never achieving a pregnancy. How much this could change.

AustraliaPatient

We need to assess which diseases have a high likelihood of being treatable and have a low likelihood of doing damage to patients. These diseases will often be monogenetic disorders where a subset of patient cells can be modified ex vivo and infused back in vivo. It is necessary to decide how much efficiency of genome editing of a population of cells is necessary to achieve the desired effect. It is also necessary to assess cost-benefit of the technology for each disease type. Many cases a low efficiency of genome editing is enough to save a patient, because of a poor prognosis due to unavailable alternatives. Genome editing on embryos seems unnecessary, highly risky.

United StatesAcademic researcherMedical professionalResearch professional

This is a very useful tool, not just in its potential to treat important human ailments, but also for scientific research advancement.

United StatesResearch professionalStudent

There are several ethical questions of how this technology should be used. My opinion is to treat it as any other medical treatment to the individuals involved, in that as long as they understand the risks posed by their use of it, they are free to change their genome any way they see fit. Individuals retain every right to their body and genome, so other entities (i.e. governments, corporations, or hospitals) have no right to force this technology on anyone. Lastly, this technology should not be used on children unless under special circumstances (debilitating or fatal disease).

United StatesStudent

Strict regulation will prevent/delay mankind from developing amazing achievement. People wishing a moratorium in the field of genome editing are driven by fear or personal unjustified ethic/religion problems, which must be taken far from science. If we would count the number of DNA damages, it would be more risky for health a day at the beach under the sun than genome editing with the already available technologies.

ItalyAcademic researcher

Only that I hope its use is not hindered by governments that enforce too stringent regulations because they are uninformed and too scared of the potential of this technology.

United KingdomAcademic researcher

It is important that the regulations are enabling and based on scientific evidence, taking into account also the importance of public trust on the technology. An effort should be made to inform the public about the technology and its huge potential, as well as the possible risks associated. We should avoid the implementation of unduly restrictive regulations due to public mistrust based on misinformation.

SpainAcademic researcher

[The] Debate should involve the whole society and not only the scientific community. It is essential to adhere to the precautionary principle and to establish a moratorium until there exists a social basic agreement about this technology.

SpainAcademic researcherResearch professional

It is possible to use technology in a responsible, ethically sound way. To shun technologies because of challenges arising with them is, in my opinion, not the ideal choice. Misuse of technology is always possible, and even if a blockade of a certain technology is enacted, misuse is still likely to arise in darker corners. The safest, in my view, is opening up the debate, integrating and regulating.

AustriaStudent

The revolution in molecular biology that has just now arrived with the advent of CRISPR-Cas9 is game-changing, and such a revolution hasn't been observed since the invention of PCR. This technology holds such enormous and potential promise for curing maladies, that questions of ethics regarding potential negative outcomes should be set aside to consider a more fundamental question- with the potential of life-changing and life-saving technology in our grasp, is it ethical to pass moratoriums on genome editing in humans when the potential positive applications are considered?

United StatesStudent

I think that tackling viruses with a significant disease burden such as Herpes Simplex 1, Herpes Simplex 2, and HIV should be immediate priorities for gene editing.

United StatesGeneral interest

Informed public debate would assist more than regulation.

United KingdomStudent

Those in power must be calm, thoughtful and motivated only by humanity's needs and noblest desires while debating what we can and should do with current, emerging and unforeseen genome editing technologies.

United StatesAcademic researcherResearch professional

I think resolving issues around the collection, protection and interpretation of large scale genome sequencing data are far more pressing matters than CRISPR. At least as it pertains to human medicine, I would argue that these issues would need to be settled long before we can even begin to construct an ethical and policy framework to address CRISPR use in humans.

United StatesAcademic researcher

All countries around the world should have the same rules about genome editing.

SwitzerlandAcademic researcher

No but please test it in Herpes simplex virus as well because we deserve a TRUE CURE too and please push it along fast. I was raped by one of my so called "friends" in 2014 and my life and my kids' life have been turned upside down. We need a cure!

United StatesPatient

We must start to properly engage the general public on this topic. It is no longer a viable option to allow people to be ignorant to the benefits (and downfalls) of this technology. The focus must be on disseminating knowledge and explaining to people who this technology works for, what it can do and how it can be regulated effectively to negate their concerns. The mainstream media have caused confusion and misplaced negativity, we must start to turn this around.

United KingdomCharity/advocacy group worker

I, like Tom Shakespeare (doi: 10.1038/527446a), appreciate that there are disability advocates out there who will say, "I want to pass on my disability to my children because it is part of who I am. " That's fine, they shouldn't be forced to do anything. But just as the Amish were no impediment to the development of electricity, disability advocates should be no impediment to the development of gene therapy. I have conditions with a genetic basis as well and if I have children, I would like to give them the best chance of living a good life, not spending hours in clinics, taking medications every day and having to live off a pension. If I can voluntarily use CRISPR/Cas9 or other technologies to help me or my children, then I think that's an investment worth making. The best part about CRISPR is that its affordability makes access and equity almost a non-issue. For virtually any chronic condition, CRISPR is going to be a much cheaper option than a lifetime of government funded medical care.

AustraliaPatientStudent

Please apply it to Dupuytrens ASAP.

United StatesAcademic researcherResearch professionalOther

I think this has great promise for sustainable and smart agriculture. We just need to work on public opinion on GMOs.

United StatesAcademic researcherResearch professional

Get out of the way of progress. People are suffering needlessly.

United StatesIndustry executiveMedical professionalStudent

I consider that extending the period of time after which embryos must be destroyed beyond 14 days could be beneficial to society, and would not contravene the moral value of the embryo (based on intrinsic properties such as life and potential to develop into an entity of substantial moral status).

United KingdomAcademic researcher

Human genome editing is inevitable. At this point we should proceed, but proceed with caution. There are still safety concerns over accuracy, so we're still a ways from trying it in viable embryos. Focus on medical applications, and restrict uses that fall outside areas of high medical unmet need.

United StatesOther

The public must be consulted. This sort of technology is ripe for misunderstanding especially when driven by those who wish to push pseudoscience. By involving the public from the get go we can demystify the science and together, scientists and the public can start to explore the real issues involved in this technology.

United KingdomOtherStudent

Visit a nursing home and witness the incredible suffering there. If you aren't willing to do that, you shouldn't be participating in this debate. Realize that one day you and/or one of your loved ones will suffer immensely in such a nursing home, in a similar manner, most likely near the end of life. Gene editing can eliminate that suffering forever, by repairing DNA damage that occurs in cells over time, thereby leading to the eradication of cancer and virtually all chronic diseases, including the aging process itself. To disallow gene editing, and the elimination of pain and suffering it will bring, would be the most repulsive and cruel act in the history of mankind.

United StatesAcademic researcherCharity/advocacy group workerPatient's relative

To be careful is not always to be slow.

BelgiumCharity/advocacy group workerResearch professional

More public advertising. Awareness campaigns

United KingdomGeneral interest

The more discussion and the more 'debate' there is on a controversial science, the better it will be controlled and the more powerful (useful) it will actually be.

United StatesAcademic researcherMedical professional

I think the most important thing is for a societal-scientific consensus to be reached concerning the purposes of gene-editing so that research can be continued confidently in non-grey areas with clear boundaries. There are obviously many benefits to genome-editing not just in humans, so the discussions must focus not just on human issues but the broader objectives in other areas. I am not against human genome editing in principle, but acknowledge there are countless potentially harmful unintended consequences against which precautions must be taken so all the progress that can be made can be made.

United KingdomStudent

There will be debate about which "genetic diseases" are allowed to be cured by CRISPR-Cas9. Are traits like short stature or overweight allowed to be altered? I think not, but an argument can certainly be made. Taller and better-looking people make more money in the US, on average. Why not even the genetic playing field?

United StatesStudent

I think CRISPR-Cas represents a huge step into developing cures for monogenic diseases that are yet untreatable and it is a great tool for research in non-human systems so it should not be banned, but when coming to human or non-research topics, there is a lot that could go wrong if the system is misused so there should be a strong legislation framing its use.

GermanyAcademic researcher

The biggest issue to my point of view is that it is a cheap technology and that it produces undetectable changes in organisms, but these changes can have huge effects if spread in the wild. We cannot control the technology (we must be careful about "garage science").

Academic researcher

The risk of creating a new species of superhumans that will mercilessly exploit those who have not had the benefit of genetic editing must be given serious consideration.

South AfricaIndustry executive

HEFA has provided the first license for gene editing research in embryos virtually without any form of public consultation. While the research in the Francis Crick Institute seems uncontroversial in itself and useful, this step may nonetheless open up forms of research and application that are more controversial. A broader public dialogue is needed. Gene editing raises fundamental questions about the biological futures of our societies. It can not be that decisions regarding the use of gene editing are taken by a small group of political, scientific and corporate stakeholders. Forms of citizen consultation and participation are required not only to define the limits of the acceptable on the basis of a broad societal consensus.

United KingdomGeneral interest

There are millions of different scenarios regarding genome editing and Human genome editing should not be discussed only by scientists or government, but with as many disciplines as possible, starting with: WHAT/WHO is a Human embryo for us and its value and universal Human Rights.

United KingdomResearch professional

These debates should be done on a bigger scale and AFTER informing correctly the general public about genome editing pros and cons.

United KingdomMedical professional

Science blew it with biotechnology in food. We need to develop an approach to communicating a credible case for what the technology can do, who the beneficiaries are, and what are the type and exposure to risk.

United StatesPolicy professionalResearch professional

What will be the most beneficial applications of genome editing to society generally?

Curing cancer, preventing ageing, curing genetic diseases, growing stronger crops, eradicating mosquitos.

United KingdomAcademic researcherPolicy professionalStudent

Avoiding the birth of infants with serious genetic disorders who would otherwise go on to lead short, painful lives. Development of crops, foodstuffs and energies which can survive droughts and famines, particularly in the presence of global warming. Creating scientific solutions to world problems including hunger, inadequate water supplies and disease.

United KingdomStudent

Successfully treating painful and life-limiting single-gene diseases.

United KingdomCharity/advocacy group workerPatientResearch professional

In the next five years? Probably none. Thinking theoretically in the next twenty years it may have implications for disease prevention, population health, longevity etc but I doubt we will see 'super humans' as a product of genome editing in the next 50 years.

Student

Prescreening for inherited disease and fixing them.

United StatesStudent

In the short term (<15 years) - germline modification of embryos to allow prospective parents to have children free of any recessive disorder. In the medium term (15-25 years) - development of gene therapies for recessive disorders and complete elimination of conditions such as cystic fibrosis and hemoglobinopathies. In the long term (>25 years) - genetic modifications to cure polygenic disorders such as Alzheimer's or many kinds of cancer. Additionally, assuming no restrictive legislation is put in place, individuals will have the opportunity to have their multifactorial traits altered, including complex traits like intelligence.

GeorgiaAcademic researcherPolicy professional

Genome editing is a technique to accelerate gene therapy research and application progress. Also it will develop the industrial application, such as food ferrmentation, biofuel, new drugs.

ChinaAcademic researcher

Development of better animals models to study human diseases and / or gene functions, potential to fight infections cancer or genetically inherited diseases.

GermanyAcademic researcher

Organ growth, tissue growth. Finding causal ways to distinguish certain diseases.

United StatesStudent

Curative treatment for genetic diseases in living patients (post-delivery treatments which don't affect the germline - like Glybera?)

United StatesPatient's relative

Cure of genetic disorders. Raising crop yields without extra fertiliser. Modification of yeast / bacteria to produce drugs, fuel, etc.

United StatesGeneral interest

Only people who have health issues will benefit, but again which disease is very important! We should accept our nature and improve our environment problems. We already have other health issues such as HIV and malaria, they need more research. Many people are affected by malaria or HIV etc. We should concentrate more on global disorders. It is very good technique but too early for human embryo etc.

United KingdomAcademic researcher

In the long run, curing diseases that are caused by easily editable (small) mutations, such as Cystic Fibrosis.

United KingdomStudent

Advancements in basic research and in vitro drug discovery.

United KingdomStudent

Create new useful organisms for model diseases, test scientifc hypothesis and improve production of relevant industrial molecules.

United KingdomAcademic researcher

The potential therapeutic benefit of using genome editing to treat diseases ranging from viral pathogens, to cancer and genetic diseases are of unfathomable potential.

SwitzerlandAcademic researcher

Editing high risk disease-associated genes - developing antibiotics and other medicines in vivo.

United KingdomAcademic researcherOther

Eradicating plagues and saving endangered species.

Student

It would certainly be the editing of gene sequences which house the loci for genetic defects. People who have to bear the brunt of genetic defects and society's reaction to their disability can finally be relieved that their offspring can be treated more equally than they were in the past.

MalaysiaAcademic researcherStudent

In my humble opinion, genome editing has the potential to provide solutions and alternatives towards a more sustainable world, in particular, the development and improvement of microbial strains of industrial and environmental relevance. Nowadays we are facing extremely serious environmental problems, such as the accumulation of non-biodegradable plastics in landfills as a result of the massive "technology consuming tendency" over the last decades. Moreover, the replacement of fossil fuels by renewable resources will certainly help in the transition from a petrol-based economy to a bio-based one.

PortugalAcademic researcher

Help screen for and fix generic mutations before birth, particularly blood disorders via hematopoetic system which is easily accesible.

United StatesStudent

Replacing genes that cause hereditary disease. Modifying genes to be resistant to some diseases. Greater understanding of DNA and how it works for use in treating genes, modifying plants, modifying bacteria to produce or consume certain desirables or pollution etc. Growing human organs for implantation via hosts. Understanding of embryos in general, how stem cells work and how organs know where to grow, and birth defects.

United StatesStudent

Hard to say. There are so many issues that need tackling before this - global issues of poverty and avoidable diseases in childhood in developing world, inequality, climate change...

United KingdomMedical professional

Gaining a more in-depth understanding of how components of the nervous system function so cohesively would provide insight into numerous diseases, potentially affecting diagnosis, treatment, etc.

Patient's relativeStudent

The ability to cure defects in the human genome which cause suffering or disease. It will offer people a chance to be free from the constraints of their genetic legacy, something that was never their choice and under which they would normally be powerless to oppose.

United StatesOther

Improving our understanding of early human development and key genes involved.

United StatesAcademic researcher

Treating infertility; avoiding birth defects.

United States

In the immediate future, it will allow for the use of alternate model organisms like primates with specific mutations that more accurately mimic human illnesses. In the much longer term (ie 50-100 years) it may allow for correction of disease mutations in the embryo. However, more immediate therapies would probably be repair of mutations in somatic cells, ie in blood disorders, or for correction and cell replacement.

United KingdomAcademic researcher

Provide the opportunity to eliminate or at least remove genetic risk factors for highly distressing illnesses e.g. dementia/Parkinsons- assist (if not cure) some infertility cases which would also be much cheaper and potentially less distressing than subsequent reproductive technologies such as mitochondrial replacement or IVF.

United KingdomStudent

Eradication of vector-borne diseases (vector control) and generation of improved attenuated vaccines. Elimination of congenital diseases (for those who can afford the technology). These are just a couple of examples - genome editing has a lot more to offer society.

United KingdomAcademic researcherResearch professional

In medicine: Engineering of stem cells for therapeutic purposes and "Correcting" mutations causing some inherited genetic diseases.

United KingdomAcademic researcher

Benefits to genetic disorders, but would this not benefit the individual more than "society generally"?

GreeceGeneral interest

I don't know, I don't think genetic diseases should be allowed to pass on to subsequent generations. The right to have babies is an unsupported claim of modern western societies. In terms of agricultural biotechnology, there's ample room for more precise interventions, which may end up in better and more efficient products. Control of transmissible diseases via mosquitos that can't produce offspring is promising too, although there are already technologies available to accomplish it. Use of xenotransplantation is another way of illegitimately extending humans' lifespan at the expense of innocent animal lives.

Academic researcherPolicy professional

Potentially the technology might be useful for somatic gene therapy of conditions with a clear genetic cause (but like with any treatment individual responses might differ due to individual regulatory and repair circuits).

AustriaAcademic researcherResearch professional

When in the right hands, genetic engineering can be used to treat disease, either by inserting functional/WT genes in individuals with a LOF mutation or to knock out defective genes posing problems and causing disease in an individuals body. I think its best that this technology remains confined to the realm of academia (for the purpose of furthering human knowledge).

CanadaStudent

Ethical discussions about the common good and what is a good life

NetherlandsAcademic researcherMedical professional

I do not have enough knowledge to state that much, however possible benefits would be that you can prevent a disease for individuals. In addition on bigger scales.

AustriaStudent

In the near future, I think the vast majority of gains will be realized in basic research (e.g., functional screens for cancer genes or mutations) and in the engineering of organisms to do useful things. Long term there may also be realistic applications in human medicine, but I feel the hype surrounding those applications far out paces the reality of our current abilities.

United StatesAcademic researcher

Development of therapeutic approaches for genetic disorders in somatic cells only. Disease modelling in animal models through efficient transgenesis. Improvement of current fundamental research.

SwitzerlandAcademic researcher

A huge advance in understanding basic biological science.

United StatesResearch professional

Treatment if not a cure for many devastating diseases such as "Parkinson's."

United StatesPatient's relative

Certainly the health and agricultural benefits of this technology will be huge. Genetic modification is now something that can be accessed by all biology laboratories. Next generation sequencing was a revolution for the study of the genome, this will be revolutionary for the editing of the genome.

United KingdomOtherStudent

It will accelerate pace of applied genetic technologies, such as those arising from synthetic biology, agricultural biology, cancer biology.

United StatesAcademic researcherResearch professionalOther

Treating lethal conditions, genetic research, modifying mosquitoes to help eradicate diseases like Zika.

United StatesStudent

What factors and sources of information have most influenced your views about genome editing?

News coverage, media articles, academic research.

Student

As evident above I am rather ignorant on these matters. My views are influenced in two ways: firstly by awareness that humanity and the world faces very significant problems related to global warming and provision of food and energy to an increasing population; secondly by the knowledge that we are very limited in our scope for predicting the effects of various small changes to our natural environments, so any measures to address the problems faced by humanities are accompanied by potentially large, unknown risks.

United KingdomStudent

Disability theory, reading about animal husbandry and issues surrounding selective breeding.

United KingdomCharity/advocacy group workerPatientResearch professional

Journal articles, conference talks, attitude of geneticists and bioethicists. Also some aspect of popular culture and science fiction in terms of abstract thought on the possible future of genetic editing.

Student

I am a researcher using CRISPR to genetically engineer mice, and cells, in a basic research environment / academic institution, so I follow the scientific literature on gene editing very closely. I am also following news reports that relate to the debate over ethical issues on this subject.

United StatesAcademic researcher

My formal education in molecular biology.

United StatesStudent

Range of technical and ethical literature, including: empirical studies, proof-of-concept studies, 'transhumanist' literature (e.g. Bostrom, Savulescu), and 'bio-conservatist' literature (e.g. Fukuyama).

GeorgiaAcademic researcherPolicy professional

Patient Interaction. Some limited academic reading for general interest (not area of professional work). Brief mentions in graduate masters degree. Mainstream media reports.

United KingdomCharity/advocacy group workerMedical professional

Medical school.

United StatesAcademic researcherMedical professional

I work on the synthetic biology field and I am fascinated by the things that we are able to do even at our proper lab level. My professors and the people working with me have mostly influenced my views. I am really satisfied with the maturity and the seriousness that we approach the genome editing concept, keeping always on mind the limits placed by nature.

FranceStudent

Watching videos, reading about challenges of the future, looking at what companies google buys.

United KingdomIndustry executive

I'm an ordinary Joe, so my information comes from the media, such as The Conversation and the BBC, viewed in the light of history and yes, some of the less hysterical popular fiction.

United Kingdom

We cannot trust humans! I am a scientist. I know how this system works, I use [the technology] myself in the lab. I have no influences.

United KingdomAcademic researcher

I read a wide range of views on this topic, from futurists, to researchers, to funders, to legislators, to religious critics, to social justice critics. The greatest influence has come from critiques of venture capital, Big Pharma, and the levels of social inequality that impact our healthcare system already.

United StatesAcademic researcherCharity/advocacy group workerPolicy professional

Primary research material. Presentations from George Church.

SwitzerlandAcademic researcher

I have a background in biochemistry and genetics so I am reasonably well informed. I have read news reports on the new techniques. It's still a very complex issue and I can imagine non-biologists being quite baffled.

United KingdomAcademic researcherOther

I am an undergraduate medical student so have a favourable view of any technology that might alleviate suffering or eliminate disease.

United KingdomStudent

1) The internet, specifically youtube. 2) Science fiction. 3) My biology teachers. 4) Books on biology.

IndiaStudent

Reading articles on iflscience, reading about it on Reddit, watching videos about how it works on youtube and overall satisfying my curiosity on the matter.

RomaniaStudent

Reading tons on the Internet.

United StatesMedical professional

Practiced as RN in many different work environments over 40 year span, including almost 11 years as cancer nurse at NIH Clinical Center. Lifelong interest in the sciences, being a human physiology geek.

United StatesIndustry executiveMedical professional

I'm a bioengineering student so I've taken classes on Synthetic Biology and modified e.coli to become recombinant. I've also had lectures on bioethics and researched some genetic disorders with possible treatment and seen trials on animals that have greatly improved quality of life. However, I'm also fairly pro-life, though not particularly religious and so I understand some of the issues that people may have with it.

United StatesStudent

Podcasts discussing the ethics of genome editing, scientific journals reporting successes in artificial manufacture of insulin and other useful products, podcasts explaining the CRISPR gene (Radiolab podcast in 2013/2014).

United KingdomStudent

The Bionews, the publications by governmental ethics councils of my country, the fact that some of my friends are desperately waiting for new treatments to be available for them.

GermanyAcademic researcher

The small number of reports and articles I have read about genome editing (Nature, Bionews, The Economist, BBC). I also recently read the Nuffield Council Bioethics workshop report and background paper on the subject.

United KingdomAcademic researcherCharity/advocacy group worker

During my degree in development studies we studied GM technology and the its purported relationship to farmer suicides in India. These studies tended to be split between social scientists catastrophising about GM tech and the 'natural' scientists taking a utopian line. For me the issues turned out to be farmers not being able to adapt their practices to the new political and agro economy that GM brought, rather than the technology in itself being malign. I think also intellectual property of the GM products were more divisive than the tech itself. So farmers' knowledge about GM (and GM producers knowledge) in relation to crop and weather cycles that farmers were used to etc. were more crucial in the efficacy or not of the tech. Perhaps I take the cliche view that it is not necessarily the tech per se which is necessarily 'bad' or 'good', but what's important is what happens when it is inevitably embedded in socio/political/economic/cultural/environmental dynamics. The utopians believe the tech is inherently (or should be) immune from these dynamics and therefore believe they can easily calculate the risks/outcomes given these other factors shouldn't play a part, whereas the catastrophisers take a romantic view of tech. as 'unnatural'.

United KingdomStudent

My views are influenced by my lack of knowledge in this area!

IrelandMedical professional

The ever present law of unintended consequences influences my view. So does the complexity of the systems we attempt to impact with genome editing - for example to think that replacing mitochondria would be as simple as "changing the battery" in a cell is simple minded and ignorant.

United StatesMedical professionalOther

I'm a 4th biochem student. This is all professors are talking about nowadays.

CanadaStudent

Wrong expectations based on speculations by biotech and private companies.

Hong KongAcademic researcher

My current work with genome editing tools and scientific publications.

SwitzerlandAcademic researcher

Being cured from Herpes simplex virus and being able to live a normal life again because I feel like a prisoner in my own body.

United StatesPatient

Degree background and my current occupation in the scientific publishing industry. My experiences have led me to believe that properly applied and regulated genome editing could be the greatest scientific development across all relevant areas of research ever.

United KingdomCharity/advocacy group worker

Speaking to researchers, clinicians and drug developers.

United StatesOther

Humankind's inclination to competitive othering.

South AfricaIndustry executive

Which applications of genome editing will raise the most serious ethical issues?

Biosafety and the abuse of this technology.

ChinaAcademic researcher

I don't think this prediction can be made at present, as we don't understand enough and history has proved that we are very poor predictors of consequences. If we do proceed, and I think it's inevitable that we will, because someone somewhere will smell kudos and big profits out of this, it needs to be with utmost caution on all fronts - going step by tiny step.

United Kingdom

Non-health related genome editing. Human enhancement.

United KingdomStudent

While the potential for germ-line editing is there, I do not foresee it becoming a popular option for designer babies. Instead I see the environmental risk of genome editing (particularly using gene drives) in plants and animals being a greater threat. In addition, genome editing viruses could represent a serious bio-terrorism threat (genome specific bio-weapons).

SwitzerlandAcademic researcher

If the genome editing was used to just clone to suit the needs of an individual I don't believe it should happen, however if it was used to prevent for example cancer and they new for certainty it would work or there was a likely chance of it working then yes absolutely. However the experimental side should also be looked into to see whether it's ethical and people aren't just being used for experimental purposes.

United KingdomResearch professional

Eugenics. The ability to negatively select against pathological traits ultimately enables the positive selection of other traits that are not linked to disease, e.g. eye colour, height etc. This has the potential to be a very slippery slope.

United KingdomStudent

The biggest controversy is caused by this technology's potential to further the inequality of our society (of course, by creating so called "superhumans" that have complete disease immunity or way better memory or a better muscle mass etc. This technology would probably be shunned by people that can't have access to it) . I don't really understand why this is a problem at all when equality is an ideal.

RomaniaStudent

Accuracy and safety of diagnostic interventions of embryos & fetuses. Access to testing & treatment for people who want or need it. Altering human DNA for anything other than repairing defects. Mixing animal DNA into human embryos or making "chimeras" that include human DNA for experimentation.

United StatesIndustry executiveMedical professional

Any that are not to save lives: Aesthetics-related genome editing should not be done.

United StatesStudent

Lasting epigenetic changes in further generations.

United StatesOther

Designer babies' if the science is allowed to be commercialised or go unchecked - where to draw the line on what we can edit (e.g. the removal of a terminal disease-causing mutation vs removing a learning difficulty. What is right and what isn't?); potential loss of biodiversity from modified organisms that are too successful; patents meaning that life saving technology is out of reach for the masses; potential for creating allergens?; the technology causing fear among people who haven't been educated about the facts.

United KingdomStudent

All of the above; interfering with nature and natural processes and therefore the balance of life; Raises the question of what good is, what is a good life for humans and of the Meaning and Purpose of (Human) Life; also could developments of this kind lead to greater health inequalities?

United KingdomGeneral interest

The potential ability to produce "designer babies" that are physically/mentally superior to other children, furthering the divide between those with money and those without. We could also inadvertently make species more vulnerable if we all focus on certain designer genes and reduce genetic variability.

United StatesGeneral interest

The most prevalent issue I see is defining what qualifies as a disability, both in terms of overall diseases and on a cases by case basis in reference to a patient's severity of symptoms.

Patient's relativeStudent

Availability for everyone. Simply put, this technology cannot be allowed to be hoarded by only the wealthy. It needs to be made available to everyone directly from the beginning.

United StatesOther

I believe that regulation of genome editing will raise more serious ethical issues than the editing itself.

United StatesAcademic researcher

The possible creation of so called "designer babies". However, that seems far away still as we don't fully understand all the genes and processes involved in the development of traits like eye colour. Our current ignorance aside, the possibility of genetic descrimination and eugenics should feature heavily in the ethical debate.

AustraliaResearch professionalStudent

I worry about how far this may go. With proper and ethical handling, this can greatly benefit humanity. However, I cannot help but express concern that this will turn into a "human manufacturing" industry. Even with proper care, this could lead to a future of humans "losing" their humanity through design. At the same time this can partially be a good thing if limits and restrictions are established. All in all, extreme scrutiny, honesty, and ethical decision making can help curb these worries.

United StatesStudent

The risk of application to a clinical setting before the appropriate safety investigations have been carried out.

United KingdomStudent

Ethical issues arising may include those raised in the scientific community pertaining to creation of "designer babies." However, in my view we are very far from that as we are still miles away from understanding every genetic change that would be required to create let's say, super smart or super strong humans. My view is that the therapeutic potential, as in gene correction, far outweighs the potential of the technique to generate such cosmetic changes.

United KingdomAcademic researcher

Possibly adverse irreversible effects in the resultant individual (and subsequent generations) infringe on the rights of those with disabilities (seen as a lower class and pressure put on to eradicate).

United KingdomStudent

Designer babies - some will be able to afford genome editing "services" while others won't. Genetic disorders may, consequenctly, be eradicated in wealthy families but the poor will continue to inherit genetic diseases; thereby, further contributing to the gap between the rich and the poor. This issue would not arise if genome editing could be available to everyone, worldwide - but we all know this will never be the case.

United KingdomAcademic researcherResearch professional

In humans: "improvements" of human genome to "cure" socially disadvantaging traits (short stature, myopia, Low IQ-associated alleles...) Environmental: Starting a genetic modification "gold rush" where corporations will race to construct and patent a multitude of GMOs before their competitors, a situation creating very strong incentives to "cut corners" with ethical or regulatory requirements. However I think the wording of this survey question is possibly restrictive. The most serious concern is not about any single specific application but about the fact that the low cost and ease of use of the technology will make genetic manipulation accessible to a large number of actors in many countries, including some with no firmly established regulatory institutions or who had no need until now of legislation in this area.

United KingdomAcademic researcher

Unequal access to the benefits of this biotechnology, making poor people even more vulnerable than rich people, both socially and biologically.

BrazilAcademic researcher

Presently hard to answer: regarding environment, the issue touches on general concerns regarding release of bioengineered crops and animals; several issues around germline - from promisory market to new ways of further supporting a trial and discard mentality regarding life in general and increasing emphasis on a 'duty' to repair and a general understanding of evolution as 'imperfect' thus fostering a view that life processes can be optimised to an ideal extent (this cannot work as biology is complex and currently can best be understood as a constant learning and developing process; therefore the chance is high that one 'site' is repaired but others 'pop up'); for engineering organs I think there are so many unresolved issues that it is extremely premature to expect the perfect organs for the future; and the anti-ageing may be good marketing tool but in fact I wonder whether such applications will even cause more pronounced gaps in terms of social justice.

AustriaAcademic researcherResearch professional

When this technology falls into that hands of big pharma / cooporate industry it runs the risk of abuse. I think the main issue is that this technology is just as effective in GERM LINE cells as it is in somatic cells, meaning that we can engineer humans with specific qualities or traits that is present in all cells. While beneficial in some senses (ie. treat a family with known BRCA1-inheritance with a WT BRCA1... Probably not useful but just an idea), can also lead to unethical genetic testing on humans (cough Mengele).

CanadaStudent

The potential for gene drive technology to irreversibly change populations of organisms potentially leading to unforeseen ecological and evolutionary impacts.

United StatesResearch professionalStudent

Editing of embryos and transmission to offspring. Implications for the environment through editing of plants and insects.

SwitzerlandAcademic researcher

People will complain about embryonic gene editing in humans. But really, I wish my genes had been edited when I was an embryo to prevent various health problems that I now experience and are getting worse with age.

AustraliaPatientStudent

Potential for environmental damage.

United StatesResearch professional

Should only be used for cures, such as replacement for dwindling antibiotics.

United StatesPatient's relative

Enabling selection for non-important medical purposes, e.g sex selection or trait selection (colouring, intelligence).

United KingdomAcademic researcher

Human genome editing and released animals.

United KingdomOtherStudent

Cosmetic and intelligence modifications if not freely available to everyone.

South AfricaIndustry executive

Access for people without means - will it be yet another therapy available at huge costs to elites?

General interest

The idea of designer babies raises ethical issues without warrant. Traits such as intelligence and athleticism are polygenetic but, our best gene editing tool is highly specific for single genes therefore; the ethical issues is currently non existent. To further debunk the issue scientists have very little understanding of traits such as intelligence and would have no clue where to gene edit in an embryo.

United StatesStudent