A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: donation

Keys to more open debates

We are used to thinking that research is either theoretical or empirical, or a combination of theoretical and empirical approaches. I want to suggest that there are also studies that are neither theoretical nor empirical, even though it may seem unthinkable at first. This third possibility often occurs together with the other two, with which it is then interwoven without us particularly noticing it.

What is this third, seemingly unthinkable possibility? To think for yourself! Research rarely runs completely friction-free. At regular intervals, uncertainties appear around both theoretical and empirical starting points, which we have to clarify for ourselves. We then need to reflect on our starting points and perhaps even reconsider them. I am not referring primarily to how new scientific findings can justify re-examination of hypotheses, but to the continuous re-examinations that must be made in the research process that leads to these new findings. It happens so naturally in research work that you do not always think about the fact that you, as a researcher, also think for yourself, reconsider your starting points during the course of the work. Of course, thinking for yourself does not necessarily mean that you think alone. It often happens in conversations with colleagues or at research seminars. But in these situations there are no obvious starting points to start from. The uncertainties concern the starting points that you had taken for granted, and you are therefore referred to yourself, whether you think alone or with others.

This thinking, which paradoxically we do not always think we are doing, is rarely highlighted in the finished studies that are published as scientific articles. The final publication therefore does not give a completely true picture of what the research process looked like in its entirety, which is of course not an objection. On the contrary, it would be comical if autobiographical details were highlighted in scientific publications. There you cannot usually refer to informal conversations with colleagues in corridors or seminar rooms. Nevertheless, these conversations take place as soon as we encounter uncertainties. Conversations where we think for ourselves, even when it happens together. It would hardly be research otherwise.

Do you see how we ourselves get stuck in an unclear starting point when we have difficulty imagining the possibility of academic work that is neither theoretical nor empirical? We then start from a picture of scientific research, which focuses on what already completed studies look like in article form. It can be said that we start from a “façade conception” of scientific work, which hides a lot of what happens in practice behind the façade. This can be hard to come to terms with for new PhD students, who may think that researchers just pick their theoretical and empirical starting points and then elaborate on them. A PhD student can feel bad as a researcher, because the work does not match the image you get of research by reading finished articles, where everything seems to go smoothly. If it did, it would hardly be research. Yet, when seeking funding and ethics approval, researchers are forced to present their project plans as if everything had already gone smoothly. That is, as if the research had already been completed and published.

If what I am writing here gives you an idea of how easily we humans get stuck in unclear starting points, then this blog post has already served as a simple example of the third possibility. In this post, we think together, for ourselves, about an unclear starting point, the façade conception, which we did not think we were starting from. We open our eyes to an assumption which at first we did not see, because we looked at everything through it, as through the spectacles on the nose. Such self-examination of our own starting points can sometimes be the main objective, namely in philosophical studies. There, the questions themselves are already expressions of unclear assumptions. We get entangled in our starting points. But because they sit on our noses, we also get entangled in the illusion that the questions are about something outside of us, something that can only be studied theoretically and empirically.

Today I therefore want to illustrate how differently we can work as researchers. This by suggesting the reading of two publications on the same problem, where one publication is empirical, while the other is neither empirical nor theoretical, but purely philosophical. The empirical article is authored by colleagues at CRB; the philosophical article by me. Both articles touch on ethical issues of embryo donation for stem cell research. Research that in the future may lead to treatments for, for example, Parkinson’s disease.

The empirical study is an interview study with individuals who have undergone infertility treatment at an IVF clinic. They were interviewed about how they viewed leftover frozen embryos from IVF treatment, donation of leftover embryos in general and for cell-based treatment of Parkinson’s disease in particular, and much more. Such empirical studies are important as a basis for ethical and legal discussions about embryonic stem cell research, and about the possibility of further developing the research into treatments for diseases that today lack effective treatments. Read the interview study here: Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals who underwent IVF in Sweden.

The philosophical study examines concerns about exploitation of embryo donors to stem cell research. These concerns must be discussed openly and conscientiously. But precisely because issues of exploitation are so important, the debate about them risks being polarized around opposing starting points, which are not seen and cannot be reconsidered. Debates often risk locking positions, rather than opening our minds. The philosophical study describes such tendencies to be misled by our own concepts when we debate medical research, the pharmaceutical industry and risks of exploitation in donation to research. It wants to clarify the conditions for a more thoughtful and open discussion. Read the philosophical study here: The Invisible Patient: Concerns about Donor Exploitation in Stem Cell Research.

It is easy to see the relevance of the empirical study, as it has results to refer to in the debate. Despite the empirical nature of the study, I dare to suggest that the researchers also “philosophized” about uncertainties that appeared during the course of the work; that they thought for themselves. Perhaps it is not quite as easy to see the relevance of the purely philosophical study, since it does not result in new findings or normative positions that can be referred to in the debate. It only helps us to see how certain mental starting points limit our understanding, if they are not noticed and re-examined. Of what use are such philosophical exercises?

Perhaps the use of philosophy is similar to the use of a key that fits in the lock, when we want to get out of a locked room. The only thing is that in philosophy we often need the “key” already to see that we are locked up. Philosophical keys are thus forged as needed, to help us see our attachments to unclear starting points that need to be reconsidered. You cannot refer to such keys. You must use them yourself, on yourself.

While I was writing this “key” post, diligent colleagues at CRB published another empirical study on the use of human embryonic stem cells for medical treatments. This time an online survey among a random selection of Swedish citizens (reference and link below). The authors emphasize that even empirical studies can unlock polarized debates. This by supplementing the views of engaged debaters, who can sometimes have great influence, with findings on the views of the public and affected groups: voices that are not always heard in the debate. Empirical studies thus also function as keys to more open and thoughtful discussions. In this case, the “keys” are findings that can be referred to in debates.

– Two types of keys, which can contribute in different ways to more open debates.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Bywall, K.S., Holte, J., Brodin, T. et al. Would you consider donating your left-over embryos to treat Parkinson’s disease? Interviews with individuals that underwent IVF in Sweden. BMC Med Ethics 23, 124 (2022). https://doi.org/10.1186/s12910-022-00864-y

Segerdahl, P. The Invisible Patient: Concerns about Donor Exploitation in Stem Cell Research. Health Care Analysis 30, 240–253 (2022). https://doi.org/10.1007/s10728-022-00448-2

Grauman, Å., Hansson, M., Nyholm, D. et al. Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment. BMC Med Ethics 23, 138 (2022). https://doi.org/10.1186/s12910-022-00878-6

This post in Swedish

We recommend readings

Reality surpasses our concepts

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