Specialist in bioethics Sergey Shevchenko on cyborgs, human genome editing and Angeline Jolie surgery

“In one state the person is dead, she is taken to another state in the same country and she becomes alive”

Sergey, you study quite a new field of science. Could you tell us what bioethics studies in general and what problems it solves?

Bioethics is not biology/medicine plus ethics. Apart from simply ethical problems that arise when using biotechnologies, bioethics considers a human: where he starts and where he ends. One of the founder fathers of bioethics in Russia Boris Yudin has a concept of a human’s border areas. For instance, one border area is before a person is born. The point is that there is no universal and clear answer to the question when life begins. Now we don’t think about it, we seem to understand what a human is. But as soon as we look into these border areas, questions and debates arise. Somebody says that human life begins when the embryo’s heart starts to beat. Somebody says that it is when it is born. According to Russian law, a baby is a human and citizen at birth.

But isn’t the foetus an almost a developed human in the seventh month of pregnancy?

According to legal standards, when the embryo is inside the mother’s body, it isn’t called a human. It is the juridical definition. If the embryo is born in the seventh month, it is already a human, and if it is in the mother’s body, it isn’t so far a human. There is a lot of difficulties, you know. It seems to be a simple problem that has existed for thousands of years, and we already don’t know where a human begins.

Neither do we know where a human ends because a person can die in hospital very slowly. Today the criterion of death is brain death. A person or his relatives sometimes choose life support in intensive care, and then the patient breaths, his heart beats and he has even a healthy face skin colour thanks to artificial ventilation, that’s to say, it is what is considered to be signals of life.

Besides, there are different criterions of brain death. There is no strict definition in this issue. There was a case in the USA. In a state a girl was recognised dead because of brain death. Her parents took her to another state, and she was recognised alive there. And she was in ICU for another month and then died. Nevertheless, it is quite a strange situation. In one state the person is dead, she is taken to another state in the same country and she becomes alive.

These are the border areas bioethics deals with too. Bioethics studies the boundaries of human and humane. I would define this science this way. Bioethics appeared like a reaction to biotechnological, biomedical challenges in the second half of the 20^th century. In other words, biotechnologies become more complex, they create more problems for society. It is more delicate than studying the risks and benefits of technology for human.

According to legal standards, when the embryo is inside the mother’s body, it isn’t called a person. It is the juridical definition. If the embryo is born in the seventh month, it is already a human, and if it is in the mother’s body, it isn’t so far a human

“Jolie said she had her breasts removed, and the share of the company that offered BRCA gene tests rose 1,5 times”

One of your articles is called the Angelina Jolie Enigma. What is it about?

This article was published as co-authorship with Pavel Tischenko. It is about an interesting case in fundamental science, medicine and society. You probably know that Jolie found out she had a mutant version of BRCA. Moreover, she had a disposition to it: her mother and some other close relative had breast cancer. In other words, she found a gene that conditions the risk of having breast cancer. The risk of having cancer by 60 years with this gene is 87%.

Jolie decided to undergo mastectomy, have her breasts removed. When she said about it in public, the shares of the company that offered tests to find the BRCA gene rose 1,5 times. And crowds of women rushed to the hospital to find this gene, though not everyone has to do it. BRCA gene is met in certain ethnical groups, and also if you have relatives who had breast cancer. Crowds of women decided to undergo the surgery, have their breasts removed so that they wouldn’t have cancer. It is hype. Though this choice is founded not only psychologically but also clinically, the buzz around this story is very inadequate.

Does it mean that some corporations sponsor the mass media so that they will talk about new ways of treatment and diagnosis?

No. Here Jolie rather sponsored the corporation, whether she wanted it or not. I don’t see corporations’ conspiracy there. It is hype. A crowd of patients go to the hospital because of the hype, and doctors have to work with it. For instance, in Russia, there is a legislative regulation of such surgery. I mean, on the one hand, it is hype but, on the other hand, it is applied problems because it is hard to prevent mastectomy in Russia. One can go to a plastic surgeon, have the breasts removed and substitute them with implants. But a patient can go to a public institution with such a problem. One can’t just go and have the breasts removed. A person’s reaction to a risk of fatal disease is a serious problem. This is why I think our article about Jolie must be of practical utility to doctors.

In the USA, the media turn not only to stars but also the common people who have to make a difficult choice. In this respect, it isn’t a bad tradition. On the other hand, they, of course, exploit readers and viewers’ emotions, but it is quite interesting for people who have such a problem. Firstly, they understand they aren’t the only one in the world. Secondly, they stop being afraid to speak about it. It is also an important ethical problem.

Jolie decided to undergo mastectomy, have her breasts removed. When she said about it in public, the shares of the company that offered tests to find the BRCA gene rose 1,5 times. And crowds of women rushed to the hospital to find this gene, though not everyone has to do it

“Genome editing helps just few people so far, but there is much more buzz around it”

What have scientists achieved in human genome editing?

I will cite an article that was published in famous Science magazine. Correspondent of this magazine Jon Cohen has recently been in our institute and met to talk about human genome editing where our specialists in bioethics participated.

Chinese professor He Jiankui edited children's genome before their birth so that they wouldn’t be infected with HIV one of the parents had. He did it unbeknownst to the scientific community. These children were born. It is unknown where He Jiankui disappeared. The case is quite opaque because there is a moratorium on human genome editing. In 2015, Chinese edited inviable embryos’ genome again. Nature and other leading newspapers refused to publish the research. There aren’t so far ethical standards for it, but there is a legislative ban of the European Council and other international organisations.

Russian scientist Denis Rebrikov claimed that he developed a programme to develop technologies for CRISPR/Cas9 genome editing that He Jiankui used. He did it openly, publicly. We met with Science’s journalist to discuss this case. Rebrikov who offered his experimental programme for genome editing and other geneticists including chief clinician and geneticist of the Russian Ministry of Health Sergey Kutsev were at the meeting. The latter considered Rebrikov’s technology from a critical perspective. Rebrikov is a biotechnologist, not a doctor.

Why is Kutsev critical about this technology?

He talked about its restricted application, which Rebrikov admits too. The patients who need this technology have to have in vitro fertilisation anyway. One of the options is that to apply CRISPR technology it is necessary that both parents have mutant signs of so-called recessive diseases. In other words, grandmothers and grandfathers also have to have them. Usually, this doesn’t happen. There are few such patients. Let’s imagine that it is just 20 people in Russia. It doesn’t mean that we should solve their problems, but their problems aren’t less important than the problems of 500,000 people or a million.

We didn’t see people who need CRISPR technology. We don’t know their life situation. Science’s journalist described it for the first time. In other words, the problem is that bioethics deals with specific cases, specific problems. One can say something considering them. How can one compare a benefit and harm if we don’t even know the diagnosis of people who need this technology? There are different genetic pathologies, syndromes. For instance, do we want a child to hear applying this technology? Or do we want to treat foot syndactyly?

Chinese professor He Jiankui edited children's genome before their birth so that they wouldn’t be infected with HIV one of the parents had. He did it secretly of the scientific community. These children were born. It is unknown where He Jiankui disappeared

It seems that genome editing technology will be legalised in the next future. Will society’s life improve if children with genetic disorders aren’t born?

We should neither minimise nor exaggerate the potential of genetic engineering technologies. It is clear that scientists make big promises, so-called imaginaries. It is an interesting concept. American anthropologist, philosopher and researcher of biotechnologies Sheila Yassenoff says that imaginaries is a big great image of the future that will surprise everybody where everything will be fine. But at the moment we see that the movement is slow and its direction is opposite.

When the human genome was decoded, one could read in publications in the 90s: “We are about the decode the genome and treat all the diseases”. My academic adviser Pavel Tischenko says that he entered a university in the 70s to become a biochemist because it was considered then that biochemistry would understand everything about cancer and other diseases soon. And he introduced a new term “being almost there” analogously with Heidegger’s “being there”.

One shouldn’t think that biotechnologies mean nothing, neither should one think that we will solve everything at once. I am afraid there won’t by such means. There is no magic pill. Genome editing helps just few people so far, but there is much more buzz around it. There are technologies that have a little buzz around, but they help 20,000 people, not 20.

Where is the border between cyborg, robot and human?

It is also one of the border areas of a human. We already talked about the first two areas — the beginning of human life and its ending. There is also a third border area — between a human and an animal. It is transplantation, use of animals’ organs for a human. And the fourth area is the border between a human and machine, it is cyborgisation.

We once tried to research existing cyborgs, you know, just to meet, talk, interview them. We haven’t found real cyborgs. They exist around the world, of course. Some cases of serious cyborgisation are known. Moreover, it is not only a smart arm prosthesis, in such cases, a person really does something to improve the functions of his organism, not just substitute previously absent ones.

Does the future lie with a pile of pills for every person in the morning to be full of energy all day long, have the time for everything and not to lose a race to opponents?

Here you’ve raised two topics: the cultural difference “we and the West” and the attitude to neuropharmacology or cognitive pharmacology. People in Russia probably believe in it no less than in the West and use such stimulators as often. Sociologist Grigory Yudin with his empiric data says that faith in pills has a fundamental character. Faith in pills is higher than in medicine. If a person feels he lacks something, something goes wrong in the organism, there must be a pill for it.

Another more important problem is in political philosophy. Neoliberal economic rationality, a person’s orientation to competition with others for a job, for goods, career generates an aspiration to improve oneself with the help of pills. There is also a fear to fall sick, lose competitive advantages in the labour market.

Our students’ surveys show that health is valuable as a tool. It is needed to be successful in life, to feed one’s family in the future. And “It is just pleasant to be healthy” ranks tenth. It changes human life differently. Michel Foucault, a famous French philosopher, wrote that biological life itself became an object of management throughout the modern era.

How will a person look in the nearest future? Will we gradually lose the humane and acquire qualities of machines?

Technologies are always a product of our activity, our culture, our instructions that are conditioned by human values. One shouldn’t consider technology as something that will suddenly fall on us, and we will have to adjust to it.

The topic of Big Data is trendy now. It was said four years ago that all large organisations, businesses and public administration would have Big Data department, and others would just service it. But I am afraid the forecast won’t be true. One shouldn’t think that as now people are talking about Big Data, we are obliged to adjust to it, moreover, as soon as possible, first of all, for competition for jobs. It is an imposition of the same neoliberal logic. Humankind is able to change something, especially with consolidated efforts. If it isn’t interesting for us, it doesn’t meet our needs, why then will such a not glittering technological future come?

Not only technology security is the problem. The problem is rather that a person considers himself as a grain of sand in a competitive fight. All other problems just accumulate. I don’t want to say that any technology is ethically neutral and doesn’t include any danger. It is important to research and look into equipment development vectors, but it is also important to understand that social communication can seriously change the meaning of technology.