Ethical issues when gene editing approaches humanity

December 2, 2019

Pär SegerdahlGene editing technology, which already is used to develop genetically modified organisms (GMOs), could in the future also be used clinically in humans. One such application could be genetic modification of human embryos, editing genes that would otherwise cause disease.

Of course, the scenario of ​​clinical uses of genetic modification in humans arouses deep concern and heated debate. In addition to questions about efficacy and safety for the people who would be directly affected by the treatments, huge issues are raised about the fate of humanity. When gene editing is performed on germ cells, the changes are passed on to future generations.

What is often overlooked in the debate are ethical questions about the research that would have to precede such clinical applications. In order to develop genetic techniques that are effective and safe for humans, much research is required. One must, for example, test the techniques on human embryos. However, since genetic editing is best done at the time of fertilization (if done on the embryo, not all cells are always modified), a large number of donated gametes are probably required, where the eggs are fertilized in the laboratory to create genetically modified embryos.

Emilia Niemiec and Heidi Carmen Howard, both at CRB, draw attention to these more immediate ethical concerns. They point out that already the research, which precedes clinical applications, must be carefully considered and debated. It raises its own ethical issues.

In a letter to Nature, they highlight the large number of donated eggs that such research is likely to need. Egg donation involves stress and risks for women. Furthermore, the financial compensation they are offered can function as undue incentive for economically disadvantaged women.

Emilia Niemiec and Heidi Carmen Howard write that women who decide on egg donation should be given the opportunity to understand the ethical issues, so that they can make an informed decision and participate in the debate about gene editing. I think they have a good point when they emphasize that many ethical issues are raised already by the research work that would precede clinical applications.

A question I ask myself is how we can communicate with each other about deeply worrying future scenarios. How do we distinguish between image and reality when the anxiety starts a whole chain reaction of frightening images, which seem verified by the anxiety they trigger? How do we cool down this psychological reactivity without quenching the critical mind?

In short, how do we think and talk wisely about urgent future issues?

Pär Segerdahl

Niemiec, E. and Carmen Howard, H. 2019. Include egg donors in CRISPR gene-editing debate. Nature 575: 51

This post in Swedish

Approaching future issues - the Ethics Blog


Who belongs to us?

October 2, 2019

Pär SegerdahlBioethics has a problem with human beings, the philosopher Roland Kipke writes. It must ask who belongs to our moral community. Who has rights? Who has human dignity? Who has the moral status usually attributed to healthy adult humans? Who has the right to life?

The question is: Who belongs to us? Are human embryos included in the community? Newborns? Those with advanced dementia? Intelligent animals?

A common response to the question is to propose a philosophical criterion. Two positions dominate in bioethics. One includes all biological human beings, thereby embryos, newborns and those with advanced dementia. Everyone who belongs to the species Homo sapiens belongs to the moral community.

The second position holds that species membership is irrelevant. Instead, the focus is on mental capacities that one holds characterize a “person.” For example, rationality and self-awareness. This excludes embryos, newborns and those with advanced dementia from the community. However, a rational chimpanzee may enter. All persons belong to the moral community, regardless of species affiliation.

Kipke shows how both criteria compel us to answer the question “Who belongs to us?” in ways that contradict most people’s moral intuitions. We might accept this if the positions could be justified by strong arguments, he says. However, such arguments are missing.

What should a poor philosophical gatekeeper do then? Who should be admitted into the community? Who should be kept out?

The solution to the gatekeeper’s dilemma, Kipke suggests, is our ordinary concept of the human. When we talk about “humans,” we usually do not use the scientific concept of a biological species. Our everyday concept of a human already has moral dimensions, he points out. We cannot see a human being without seeing a living person belonging to our community. According to this third position, all humans belong to the moral community.

The only problem is that the gatekeeper needs a criterion to distinguish the human members of the community. It is true that we have everyday uses of the word “human.” It is also true that we normally have no difficulties in distinguishing a human being. However, do these uses really contain a criterion suitable for more philosophical gatekeeper tasks? They do, according to Kipke. He holds that there is a characteristic “living human gestalt or the form of the body,” especially the face, which easily allows recognition of a human being, even when she is seriously injured and deformed.

The “living human form” would thus be the criterion. This form makes us equals in the moral community.

Kipke’s article is philosophically exciting and his criticism of the two dominant positions is revealing. Personally, I nevertheless find the still dominant preoccupation with the question “Who belongs to us?” somewhat terrifying, and perhaps even inhuman. Bioethics treats human concerns about, for example, genetics and stem cell research. Admittedly, people often express their concerns in the form of boundary issues. People who worry about the destruction of embryos in stem cell research, for example, can talk about the embryo as a human individual or as a potential person. However, addressing their worries by suggesting that our common language contains a criterion that has the authority to separate the members of the moral community will probably not still the minds of such worried and perhaps even angry humans. They need a lot more attention. Perhaps it turns out that the intellectual boundary issue concealed the living source of their concerns and made it impossible to treat the problem at its source.

I believe we need a bioethics that responds to moral concerns more humanly and communicatively than only as philosophical boundary issues. Could we not use our ordinary language to think together about the issues that worry us? To refer to an ordinary concept of the human as an arbiter that supposedly dictates the answers to bioethical boundary issues seems characteristic of a smaller community: one that is professionally preoccupied with philosophical boundary issues.

Is that not placing bioethics before life? Is it not putting the cart before the horse?

Pär Segerdahl

Kipke R. Being human: Why and in what sense it is morally relevant. Bioethics. 2019;00:1–11. https://doi.org/10.1111/bioe.12656

This post in Swedish

We like challenging questions - the ethics blog


Reality surpasses our concepts

March 20, 2019

Pär SegerdahlAfter thinking for some time about donation of human eggs and embryos to stem cell research, I want to express myself as in the headline. Reality surpasses our concepts of it. This is not as strange as it sounds. For, if our concepts already reflected reality, then no one would need to do research, or to think. Just talking would be sufficient. An endless flood of words could replace all sincere aspirations to understand life and the world.

So what is it about donation to research that makes me want to express myself as in the headline? Everyone knows that blood donation is a gift to patients. This makes blood donation humanly understandable. People want to help fellow human beings in need, even strangers. But what about donation of eggs and embryos to stem cell research? Conceptually, the donation does not go to patients in need, but to researchers. This makes it difficult to understand donation to research. Are we to assume that people feel sorry for researchers and that they therefore want to support them by donating to them? Why do donors support research?

Not only does the concept of “donation to research” make donation difficult to understand from a human point of view. The concept also causes donation to appear suspiciously exploitative. The recipient of the donation is more powerful than the donor is. Moreover, if research results are commercialized, the recipient can make a profit on the work that the donation enables, without the donor receiving any share of it. So not only does literal faith in the concept of “donation to research” make a free will to donate difficult to understand. The donation also looks suspicious. Some argue that we should prevent an increasingly capitalized life science sector from exploiting self-sacrificing donors in this way.

Nevertheless, there are people who freely donate to research. Why? I guess it often is because they use research merely as an intermediary, to be able to give to patients. The patient is equally important in donation to research as in blood donation, although the concept does not reflect this relationship. Let me give an unexpected example of intermediaries.

About one kilogram of bacteria lives in our intestinal tract. Without these bacteria, our bodies would not be able to absorb many of the nutrients in the food we eat. When we swallow the food, these bacteria are in a sense the first diners, and our bodies have to wait patiently until they have finished eating. Even if we know this, we rarely think that we are swallowing food in order to allow bacteria in the stomach to eat first. We eat without being aware of the work that these “intermediaries” in the stomach have to do, in order for the nutrients to become available to the body.

The concept of “eating” does not reflect this relationship between bacteria and us. This is not a shortcoming of the concept. On the contrary, it would be very unpleasant if the concept reflected the bacteria’s work in our guts. Who would then want to say, “Let us sit down and eat”? However, problems arise if we have too much literal faith in concepts. Our vocabulary will then begin to impose limitations on us. Our own language will shrink our otherwise open minds to mental caves, where the words cast shadows on the walls.

Researchers, then, can be seen as intermediaries between donors and patients. I hope I do not upset sensitive minds if I suggest that researchers are the bacteria that we need to make donated material available to future patients’ bodies. That is why people donate to research. They sense, more or less intuitively, that research functions as an intermediary. “Donation to research” is at heart a gift to patients.

It is even more complicated, however, for research alone cannot act as intermediary. The task is too great. For the donation to become a gift to patients, a capitalized life science sector is needed, and a healthcare system, and much else. Moreover, just as the beneficiary function of bacteria in our stomachs requires a diet that regulates the balance between bacteria, this system of intermediaries, extending from donor to patient, needs regulation and monitoring, so that all the actors work harmoniously together. We cannot allow quacks to sell dangerous or inefficient drugs to the sick, and we cannot allow researchers to access donated material in any way they see fit.

Donation to research is a striking example of how reality surpasses our concepts. When we succeed in overcoming our literal faith in concepts – when we discover the way out of the cave and see the light – then donation to research finally becomes humanly understandable. The donor uses research to be able to give to patients. Moreover, donation to research ceases to appear as a suspicious transaction between unequal parties, since the donor uses the relatively powerful direct recipient to give to a more understandable recipient: the patient. Trying to counteract exploitation by paying the donor large sums, or by giving the donor a share of the profit, would tie the donor to the wrong recipient: the one emphasized in the concept.

As mentioned, the donor uses not only research to reach the patient, but a whole system of intermediaries, such as industry, healthcare and governmental control. This system of beneficial societal bacteria is therefore, to some extent, subordinate to the donor’s will to help patients. Or rather, the subordination is an aspect of the relationship, as is bacteria’s subordination to human eating. If we want to, we can always see the opposite aspect as well. Who really eats first and who last? Who really uses whom? The questions lack definitive answers, for the aspects change into one another.

With this post, I wanted to suggest the possibility of a bigger seeing, which we can learn to use wisely in our thinking when we discover how conceptually purified standpoints easily shrink our minds to mental caves.

Pär Segerdahl

This post in Swedish

We think about bioethics : www.ethicsblog.crb.uu.se


Dangers of moral words

December 11, 2018

Pär SegerdahlThe philosopher Bernard Williams distinguished between thick ethical concepts such as “brave” and “brutal,” which have both descriptive and evaluative content, and thin ethical concepts such as “right” and “wrong,” which are purely evaluative. “Murder” and “exploitation” are thick ethical concepts that sometimes play a central role in ethical debate. They have descriptive content combined with a negative evaluation: murder and exploitation are wrong.

This duality of thick moral words, their descriptive/normative Janus face, makes them an impelling part of the vocabulary of most, if not all, ideological movements. If you oppose X, and can demonstrate that X, in fact, involves murder or exploitation (descriptive aspect), then you have immediately demonstrated that X must be opposed (normative aspect). Thick ethical concepts are often used in conflictual situations to legitimize violent actions against people who are described as intriguing, murderous, exploitive, and much else. Since the words are taken to describe reality as it is, such bad individuals must be watched over and, if necessary, acted against.

Thick moral words thus easily lend themselves to functioning as ideological firearms. Their descriptive aspect allows taking aim. Their evaluative aspect says, “Fire!” I want to mention three further dangers of thick ethical concepts.

Dogmatism. The first is that it is difficult to raise questions about their applicability, since it can appear as if you questioned the evaluative component. Let us say that you raise the question if embryo destruction really constitutes murder. In the eyes of those who take this description for reality, you appear like a treacherous person who shrewdly argues that murder might be right! Simply raising the question, no matter how open-mindedly you do it, places you in the firing line. Your very open-mindedness speaks against you: “Murder is not something to be open-minded about!”

Righteousness. A second troublesome feature is that thick ethical concepts produce instant goodness in any ideological movement. Any ideology is on the right side, regardless of which side it is on, since it fights for what its moral vocabulary unites with the good, and fights against what its vocabulary unites with the bad. Any ideology has the right and the duty to act resolutely against what its dualistic vocabulary picks out as impermissible features of reality. – Which side for peace are you on?

Suffering. A third problem is that thick moral words produce suffering in the form of gnawing suspicions and fears. Since we are not omniscient, there is much we do not know, for example, about embryonic stem cell research. Thick ethical concepts here tend to appear in our heads as stand-ins for reality. They appear in the form of an inner voice that tells us what stem cell research is. This is not a purely descriptive “is,” but a double-edged one, for what the voice in the head says the research is can be a nightmarish, “It is murder.” Since we are ignorant of much, but not of our anxiety, we cannot shake off the worrying double-edged concepts that spin in the head. They seem validated by the gnawing anxiety they produce, and we suffer without end, caught in a whirlpool of thick descriptive/normative moral language.

In pointing out dangers of thick moral words, I am not questioning their descriptive or evaluative content. Murder is a reality and it is a serious crime; the same is true of exploitation. I am just pointing out that the dual nature of thick moral words can turn our heads. Moral language can make us violent, dogmatic, righteous, and anxious about issues that perhaps exist mainly in our descriptions of reality.

I think most of us have fallen into such dark pits.

Pär Segerdahl

This post in Swedish

The Ethics Blog - Thinking about thinking


Bioethics dissolving misdirected worldliness

May 16, 2018

Pär SegerdahlWhen we feel low, we often make the mistake of scanning the external environment to find the cause of our state of mind out there. One could speak of the depressed person’s misdirected worldliness. We are convinced that something in the world makes us depressed. We exclude that we ourselves play a role in the drama: “I am depressed because he/she/they/society is so damned…”

The depressed person naturally believes that the way to happiness lies in eliminating the external cause of the depression: “If I just could be spared from dealing with him/her/them/society, I would feel a lot better.” That is what the depressed person’s worldliness looks like. We are unable to turn around and see (and treat) the emergence of the problem within ourselves.

Xenophobia might be a manifestation of the depressed person’s misunderstanding of life. We could speak of the insecure person’s misdirected worldliness. One scans the external environment to find the cause of one’s insecurity in the world. When one “finds” it, one apparently “proves” it beyond doubt. The moment one thinks about immigration, one is attacked by strong feelings of insecurity: no doubt, that’s the cause! The alternative possibility that one carries the insecurity within oneself is excluded: “I’m suffering because society is becoming increasingly insecure.”

Finally, one makes politics of the difficulty of scrutinizing oneself. One wants to eliminate the external cause of the insecurity one feels: “If we stop immigration, society will become safer and I will feel more secure!” That is what the insecure person’s misdirected worldliness looks like.

You might be surprised that even anti-xenophobia can exhibit the depressed person’s misunderstanding of life. If we lack a deep understanding of how xenophobia can arise within a human being, we will believe that there are evil people who in their stupidity spread fake statistics about increasing social insecurity. These groups must be eliminated, we think: “If there were no xenophobic groups in society, then I would feel much better.” That is what the good activist’s worldliness can look like.

Like that we go on and on, in our misdirected worldliness, because we fail to see our own role in the drama. We make politics of our inner states, which flood the world as if they were facts that should appear in the statistics. (Therefore, we see them in the statistics.)

Now you may be surprised again, because even bioethics can exhibit the depressed person’s misunderstanding of life. I am thinking of the tendency to make ethics an institution that maintains moral order in society. Certainly, biomedical research needs regulation, but sometimes regulation runs the errands of a misdirected worldliness.

A person who feels moral unease towards certain forms of research may think, “If researchers did not kill human embryos, I would feel a lot better.” Should we make policy of this internal state by banning embryonic stem cell research? Or would that be misdirected projection of an inner state on the world?

I cannot answer the question in this post; it requires more attention. All I dare to say is that we, more often than we think, are like depressed people who seek the cause of our inner states in the world. Just being able to ask if we manifest the depressed person’s misunderstanding of life is radical enough.

I imagine a bioethics that can ask the self-searching question and seek practical ways to handle it within ourselves. So that our inner states do not flood the world.

Pär Segerdahl

This post in Swedish

We think about bioethics : www.ethicsblog.crb.uu.se


Big questions do not have small answers

December 20, 2017

Pär SegerdahlSome questions we perceive are “bigger” than other questions. What does it mean to live, to be, rather than not to be? When does life begin and when does it end? What is a human being? Does life have a meaning or do we endow it with mere façades of meaning?

We do not expect definitive answers to these questions, except for a joke. They are wonderings that accompany us and occasionally confront us. We may then notice that we have an attitude to them. Perhaps a different attitude today than ten years ago. The attitude is not a definitive answer, not a doctrine about reality that dry investigations could support or falsify.

Bioethics sometimes comes close to these big questions, namely, when scientists study what we can associate with the mystery of living, being, existing. An example is embryonic stem cell research, where scientists harvest stem cells from human embryos. Even proponents of such research may experience that there is something sensitive about the embryo. I would not exist, we would not live, you would not be, unless once upon a time there was an embryo…

The embryo is thus easily associated with the big questions of life. This implies that bioethics has to handle them. How does it approach them?

Usually by seeking specific answers to the questions. Like super-smart lawyers who finally get the hang of these age-old, obscure issues and straighten them out for us.

Do you know, for example, when a human being begins to exist? Two bioethicists combined biological facts with philosophical analysis to provide a definitive answer: A human being begins to exist sixteen days after fertilization.

Incorrect, other bioethicists objected. They too combined biological facts with philosophical analysis, but provided another definitive answer: A human being begins to exist already with fertilization. The only exception is twins. They begin to exist later, but much earlier than sixteen days after fertilization.

The bioethicists I am talking about are proud of their intellectual capacity to provide specific answers to such a big question about human existence. However, if big questions do not have small answers, except for a joke, do they not deliver the answer at the cost of losing the question?

The question I am currently working on is how bioethics can avoid losing the questions we perceive are “bigger” than other questions.

Pär Segerdahl

Smith, B. & Brogaard, B. 2003. Sixteen days. Journal of Medicine and Philosophy 28: 45-78.

Damschen, G., Gómez-Lobo, A. & Schönecker, D. 2006. Sixteen days? A reply to B. Smith and B. Brogaard on the beginning of human individuals. Journal of Medicine and Philosophy 31: 165-175.

This post in Swedish

We think about bioethics : www.ethicsblog.crb.uu.se


Taking people’s moral concerns seriously

September 19, 2017

Pär SegerdahlI recently published a post on how anxiety can take possession of the intellect: how anxiety, when it is interpreted by thoughts that rationalize it, can cause moral panic.

A common way of dealing with people’s moral concerns in bioethics is to take the concerns intellectually seriously. One tries to find logical reasons for or against the “correctness” of the anxiety. Is the embryo already a person? If it is, then it is correct to be morally concerned about embryonic stem cell research. Persons are then killed by researchers, who are almost murderers. However, if the embryo is not a person, but just an accumulation of cells, then there is at least one reason less to worry.

Bioethicists therefore set out to conclude the metaphysical issue about “the status of the embryo.” So that we will know whether it is intellectually correct to worry or not! One reason for this intellectualized approach is probably society’s need for foundations for decision-making. Should embryo research be allowed and, if so, in what forms? Decision-makers need to be able to motivate their decisions by citing intellectually appropriate reasons.

Bioethicists thus interpret people’s moral concerns as if they were motivated by intuitive folk-metaphysical thinking. This thinking may not always be perfectly logical or scientifically informed, but it should be possible to straighten out. That would satisfy society’s need for intellectually well-founded decisions that “take people’s concerns seriously.”

The problem with this way of taking people’s concerns seriously is that their worries are intellectualized. Do we worry on the basis of logic? Are children afraid of ghosts because they cherish a metaphysical principle that assigns a dangerous status to ghosts? Can their fear be dealt with by demonstrating that their metaphysical principle is untenable? Or by pointing out to them that there is no evidence of the existence of beings with the horrible characteristics their principle assigns to “ghosts”?

Why are many people hesitant about research with human embryos? I have no definitive answer, but doubt that it is due to some folk-metaphysical doctrines about the status of the embryo. Perhaps it is more related to the fact that the embryo is associated with so much that is significant to us. It is associated with pregnancy, birth, children, family life, life and death. The connection to these intimate aspects of life means that we, without necessarily having the view that embryo research is wrong, can feel hesitant.

The question is: How do we take such moral hesitation seriously? How do we reject delusions and calm ourselves down when the intellect starts to present us with horrible scenarios that certainly would motivate anxiety? How do we do it without smoothing things over or acting like faultfinders?

I believe that bioethics should above all avoid intellectualizing people’s moral concerns; stop representing moral hesitation as the outcome of metaphysical reasoning. If people do not worry because of folk-metaphysical doctrines about the embryo, then we have no reason to debate the status of the embryo. Instead, we should begin by asking ourselves: Where does our hesitation come from?

That would mean taking ourselves seriously.

Pär Segerdahl

This post in Swedish

We like real-life ethics : www.ethicsblog.crb.uu.se

 


%d bloggers like this: