TEAM

Team Members

Collaborations

PROJECT

Description

PARTS

HUMAN PRACTICES

Education & Engagement

AWARDS

Questionnaire of Genome Editing
Interview of Genome Editing
Public Education

Public Education

Questionnaire of Genome Editing

Genome editing using CRISPR/Cas9 has the potential to make great breakthrough in many areas, including industry, agriculture and medicine. However, a few technical and ethical issues need to be resolved before its application. First, we sought to understand public attitude and opinion about this technology, by using a questionnaire of many aspects. We finally received responses from 217 people. Then, we try to identify the present and future possibilities in genome editing by interviewing scientist, ethicist, doctor and patient. Meanwhile, we wanted to recognize the relevant ethical issues of this technology by these interviews.

The people participating the questionnaire

Figure. 1A The age distribution of the people filling in the questionnaire

Figure. 1B The gender distribution of the people filling in the questionnaire

The different age groups of people participating are relatively well-distributed, while majority of them are young people below 40 who caring about scientific advance and taking part in social life more actively. The sex ratio is nearly 1:1, suggesting a good representation.

Public attitude to genome editing in different field

Figure. 2A Public attitude to genome editing in different field

In different application fields of genome editing technology, the attitude of people changes a lot. When it comes to industry applications, most people support that there is no doubt to use this technology freely. While agriculture and medicine areas entering the vision, the number of supporting decreases and the number of opposing increases. And majority of people consider that human enhancement is too crazy and immature to discuss it seriously.

Figure. 2B Public attitude to genome editing in medicine

The genome editing in medicine is so promising, as it may save thousands of lives and keep people away from disease, so most people are positive to this. However, germ cell editing may be a redline to ensuring the normal ethic of human society, the amount of people against genome editing a lot in germ cell part. And there is almost no difference in curing genetic disease and preventing life threatening disease.

Figure. 2C Public attitude to genome editing in human enhancement

Human enhancement is a Pandora's Box, which threatens all aspects of human society, but it’s so attractive and shining, persuading curious people to open it. So the people agreeing and disagreeing are nearly equal, while majority of them keep neutral.

Public knowledge level of genome editing

Figure. 3 Public knowledge level of genome editing

Genome editing technology is such a cutting-edge technology that people may not have much knowledge about it. In order to identify the public knowledge level of genome editing, we set a quiz in our questionnaire. The quiz consists of five multiple-choice questions about genome editing, if the respondent judges the statement correctly, he will get one point.

Majority of people have a well comprehension of this technology, they three points or higher score.

Here are the five statements used as our questions:

1. According to scientists, human beings developed from earlier species of animals.

2. Over time, human DNA has picked up pieces of DNA from different species and viruses that naturally mixed in with human DNA.

3. Personal behavior and environmental factors cannot change human DNA.

4. Ordinary tomatoes do not carry genes, but genetically modified tomatoes do.

5. To date, no scientists have started human genome editing trials.

The influencing factors of public attitude to genome editing in medicine

The application of genome editing technology in medicine is a hot topic which has attracted much attention. Promising prospects and ethical issues are two sides of coins, so we analyzed the influencing factors of public attitude to it.

Figure. 4A The relationship between age and public attitude to genome editing in medicine

The relationship between age and public attitude to genome editing in medicine is not so obvious. Beyond expectation, elder people are more inclined than younger people to view genome editing as an appropriate use of medical technology, partly because they suffer more pain from the disease.

Figure. 4B The relationship between gender and public attitude to genome editing in medicine

We did not find an association between gender and support or resistance to genome editing in medicine, men and women nearly have the same opinion and attitude towards it.

Figure. 4C The relationship between religious belief and public attitude to genome editing in medicine

We also did not find an connection between religious belief and support or resistance to genome editing in medicine, people with or without religious belief almost have the same opinion and attitude towards it.

Figure. 4D The relationship between education level and public attitude to genome editing in medicine

We found an association between level of education and an increased acceptance of genome editing to treat diseases. Those with a postgraduate degree are more accepting of genome editing for treating or reducing the risk of a disease than those with a high school degree or less. However, as the respondent number is limited, the ratio of people with a junior school degree strongly agreeing the genome editing in medicine is Abnormally high.

Figure. 4E The relationship between economic level and public attitude to genome editing in medicine

We also did not find an association between self-reported wealth and support or resistance to genome editing in medicine, people with higher income or with lower income nearly have the same opinion and attitude towards it.

Figure. 4F The relationship between knowledge level of genome editing and public attitude to genome editing in medicine

People with a higher knowledge level of genome editing are more likely than those who have heard nothing at all to support its application in medicine in this survey.

Figure. 4G The relationship between work experience in medicine or health industry and public attitude to genome editing in medicine

We found a strong association between work experience in medicine or health industry and an increased acceptance of genome editing to treat diseases. Maybe because these people have a more comprehensive understanding of disease, medicine and genome editing.

Figure. 4H The relationship between experience of genetic disease and public attitude to genome editing in medicine

We found a strong connection between experience of genetic disease and an increased acceptance of genome editing in medicine. People being affected by or having a family history of a monogenic or Mendelian disease may be eager to find new therapy to relieve their pain and cure their disease.

Public attitude to the regulation of genome editing

Figure. 5A Public attitude to whether scientists will use genome editing in a responsible way

Most people keep neutral to whether scientists will use genome editing in a responsible way, while people having confidence in scientists are a little more than people suspecting the responsibility institution of scientists group. Partly because of the shocking human embryo genome editing event that occurred before, the public is more concerned about the regulation of this technology.

Figure. 5B Public attitude to whether supervision organization of public should be involved in the regulation of genome editing

Majority of people believe supervision organization of public should be involved in the regulation of genome editing, the public must be engaged in discussions regarding the appropriate application of this technology.

Figure. 5C Public attitude to the regulation organization of genome editing

More than half of people think that the government should be responsible for the regulation of genome editing technology, following scientist group, supervision organization of public and business company. The public expects the establishment of a well-supervised regulation system of genome editing.

Our team member Wang Yiwen made speech about genome editing on “Innovation - the Power of Youth”,Peking University Youth Forum 2019. In her opinion, genome editing is something “out of place”. Government regulation and law can help us find what is “out of place”, but what should be “in place” is a harder and more important question. Scientists always ignore the critical opinions from public, they arrogantly owe these negative attitudes to their lacking of information. But science is not all of human-being’s civilization. Individuals are not simple parts. So a real collaboration and discussion is needed. It’s the challenge that our generation have to face up with.

Interview of Genome Editing

Scientist in the field of genome editing

Prof. Wei

“The use and regulation of genome editing is not a one-size-fits-all problem”

For the application of somatic genome editing, it will naturally produce some ethical and safety problems when applied to the clinic. The concept of clinical ethics is not right for people: whether it is basic research or clinical, as long as the warning line is involved, the standard should be consistent. Of course, this does not mean that the standard is the same. It is not that editing germ cells are not promised and that editing somatic cells is promised. It needs to be discussed. The clinical application of any technology needs to be reviewed by the ethics committee and the scientific committee. All of them need such an astringent procedure.

“The red line of genome editing is not only for forbidding, but also for protecting something.”

Our country’s regulatory system for genome

editing is not perfect, but I think it’s normal. After all, this is a relatively new technology, and we don't understand where its potential is. So we cannot strive for a perfect law. However, relevant departments still have to define a boundary to constrain the progress of the research. The WHO has organized a committee of experts to provide a guide for all countries to refer to. We are also calling through various ways to draw a red line as soon as possible: germ cells, as long as they are for the purpose of reproduction, they mustn’t be allowed. Otherwise, the contents inside and outside the red line will be confused. As the result, the entire field will be killed. China has to set such a boundary, and China must be making it.

“Genome editing can't be used for human enhancement.”

As for genome editing for human enhancement, it is a classic ethical issue. There is no standard answer, but my opinion is: "no". The quality of a gene is difficult to define. It is irresponsible to change it when we have not fully understood what the role of a gene is. Secondly, this also involves the concept of fairness. Living in different circumstances, it is difficult to have the same conclusion, which involves political, social and many other aspects. So my opinion is: at present, genome editing for enhancement should definitely not be allowed, this is the real Pandora's Box.

“Genome editing itself should not be constrained”

When the technical threshold of genome editing is low enough, “bio-hackers” will inevitably appear. The political and legal preparations of the whole society can only be constrained or avoided, not being eliminated. Therefore, I have been stressing that the development of a new technology will inevitably lead to ethical and security issues. But the tool itself is not good or bad, so we should be constrained by people rather than technology. Genome editing is not special at all. We should not stigmatize genome editing because of faults of users.

Prof. Wang

“Faced with new technology, human being should be more cautious and well-prepared.”

Genome editing for somatic cells does not involve ethical issues, which is no different from cosmetic surgery, and genome editing of germ cells is not necessary in most cases. When the parent has a disease-causing gene, it’s totally possible to get healthy offspring using in vitro fertilized and genetic screening. For the application of genome editing in terms of human enhancement, it is foreseeable that when the genome editing technology is fully mature, someone will definitely do it. But now that we don't know the consequences of changing a gene, improving human physique through genome editing is unrealistic at this stage. Therefore, the current large-scale application of genome editing to the human body does not occur, so it is especially important to supervise the minority who want to use genome editing to make profits. At present, researches on genome editing are still unclear, but there are three principles that must be adhered to: First, human beings are regarded as a community. National and even world-class regulatory and approval systems should be introduced. Second, the experiment must be open and transparent from a project’s establishment to implementation, under the condition that the privacy of experimental personnel is guaranteed. Third, with the participation of the public, the experiment is slowly advanced. The turmoil in human society is often related to changes in the environment and technology. In the 21st century, faced with new technology, human beings should be smarter and calmer.

Ethicist

Prof. Cong Yali

of Medical Ethics Program

“The discussion of ethics should be executed in extreme situations.”

Ethicists may be concerned with scientists: genome editing may be off target, but it may also cure a disease, in which case whether genome editing should be done. Ethicists need to work out a theoretical support. The control of risks and the benefits are both very important, so we are concerned about the risks and unpredictable factors of genome editing. The judgment of ethics requires the consensus of the scientific community, and the discussion of ethicists should also get scientists involved. However, all of our discussions should be based on a hypothesis: genome editing is the only way to solve problems. For the He Jiankui incident, everyone is critical, largely because genome editing is not irreplaceable. This is not what we want to discuss in ethics. We should discuss some more extreme situations.

“When genome editing is applied in human enhancement, it is enhancement, not genome editing, that is important.”

Enhancement itself is a sophisticated philosophical problem. So when talking about genome editing, we tend to weaken the part of enhancement—genome editing can be used to enhance, but we won't discuss it now. Otherwise it will make the already outstanding issues more complicated.

“A global common sense - the direction of population health is important”

Whether genome editing should be used to edit germ cells requires a balance between the public health community, the community of scientists, and the general public's aspirations, which is highlighted in many literatures—population health. It is important to reach a global common sense that includes not only scientists and ethicists, but also the public. Society is important for scientific research, and the results of scientists need to repay the society. Therefore, the scientific researchers’ behavior needs to be supervised by the public. Nowadays, many people have a chance to be lucky. They think that if genome editing is made up, they will be able to make a hit. And the failure doesn’t make any difference to him. What we have to do is to reach a consensus with the public as soon as possible to avoid such a point of view.

Doctor

Dr. Gu Weihong

“The clinical application of genome editing must be very cautious, and it is irrational to pursue new technologies unilaterally. This must be deeply rooted in people’s concept.”

For the treatment of rare diseases and genetic diseases, catching the most suitable opportunity is the most important thing. However, it is also the most difficult for some congenital diseases. In this case, genome editing therapy does have great advantages and is worth exploring. This kind of exploration must start from the scenes involving less ethical problems such as somatic cells. It is very irresponsible to insist on editing the germ cells. Once the bottom line is broken, it is difficult to hold it again. Human body is a very complicated system. Faced with most diseases, we are still in a state of puzzle. So the transformation of basic medicine to the clinical application must be cautious. Keeping in awe of nature is very important. We are not the masters of nature. Many things are beyond our foreseeability. Nowadays, many people have the behavior of "showing off". They are eager to take new technology to break through something and are pleased with themselves. This is terrible.

“Due to the fast development of technology, relatively lagging of management is inevitable.”

The development of science and technology is too fast, the manager-community does not have a sufficiently strong professional background, so they have no ability to carry out strict control in the beginning. The accident can only be cut across the board and then slowly recover. This situation is very common, but is very unfavorable for the development of emerging industries. Especially nowadays the media is developed and the science and technology are progressing so rapidly. The truth and reciprocity of all parties' information are very important. Only in this case can we reach an effective consensus and then slowly advance, ultimately legitimate it.

Dr. Yang Liping

“Genome editing has a promising future in the treatment of ophthalmic diseases”

Genome editing is promising for the treatment of ophthalmic diseases, which is related to the specificity of ophthalmology. The eye is a relatively independent organ, its lesions generally won’t spread to other organs of our body, and the lesion is easy to find. The subretinal cavity is an immune desensitization site, we will not worry about the immune response. Therefore, in the treatment of ophthalmic diseases, the risk of genome editing is relatively controllable. The US company Editas has used the CRISPR system to treat congenital blackness and has gained the FDA approval. They have started clinical trials. We have also done many animal experiments on genome editing treatment, and the results are very positive.

Patient

Ms. Zhang Xiao:

“Advances in technology are risky, but we can not flinch.”

Genome editing for human enhancement is a good technique, and I personally hope to improve some of my own differences through some techniques like this. This technology is still immature, so more people need to study it and improve it. Many successful cases have occurred under the insistence of the few. I am very willing to see the progress of this technology. Even if it takes uncertain risks, I am willing to support. Experts said that I can only live for ten years. So I have completely taken a look at the matter of life and death. Therefore, if there is any need of a volunteer for genome editing treatment in China, I will definitely go. As long as it is helpful for the treatment of rare diseases in China, as long as it can benefit the patients with the national mucopolysaccharidosis patients, I am willing to try everything I can. Being a doctor is tough, and being a doctor for rare diseases is even tougher. As a patient, what I can only help is providing information for you to study diseases well. This is also the biggest help to me.