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

Tag: human embryonic stem cells

Empirical ethics nuances ethical issues

A few years ago, my colleague Pär Segerdahl published a blog post on why bioethicists do empirical studies. He pointed out that surveys and interview studies on what people think hardly provide evidence that can decide controversial ethical issues, for example whether euthanasia should be allowed. Empirical studies rather give us a better grasp of the problem itself. They help us see what is actually at stake for people. I agree with him that ethical issues are not decided by surveys and interview studies and that such studies rather help us to see more clearly the meaning of the issues.

In this post, I want to further exemplify how empirical methods can nuance ethical questions and help us see what is at stake for people: help us see what we need to consider in the ethical discussion. I have in mind how, through a well-considered choice of empirical method, one can better describe the relative importance of ethical difficulties, values and preferences among stakeholders, as well as conflicts between ethical views. How? I am thinking of methods where respondents do not just answer what they think on certain individual issues, but are faced with complex scenarios where several factors are simultaneously at stake. Even if you have the firm opinion that drugs should not have side effects, are you perhaps still prepared to choose such a drug if it is more effective against your symptoms than other drugs, or is cheaper, or easier to use? In such studies, we create a multidimensional world with nuances for respondents to make complex decisions in.

Here is my example: Soon, therapies based on human embryonic stem cells may become a reality for patients with Parkinson’s disease. But is it morally acceptable to use human embryonic stem cells (hESC) for drug therapy? This has long been a controversial issue, partly because the embryo is destroyed when the stem cells are harvested. Perhaps the question is about to become even more topical now, when countries are changing legislation in a direction that gives the embryo a higher status and more legal protection. It is therefore particularly important that research provides a nuanced picture of the issues. In light of the political landscape and the new possibilities for treating patients with Parkinson’s, a more complex empirical method can support a better contemporary discussion about what types of research and therapies are within the scope of what can be allowed to be done with an embryo. The discussion concerns both ethics and law and must also include scientific challenges to ensure that stem cell research and therapies are carried out in ethically acceptable ways.

A common way to empirically examine the ethical issue is to look at the ethical arguments for and against the destruction of human embryos: to examine how different actors think and feel about this. Undoubtedly, such studies help us see what is at stake. But they can also easily steer respondents towards a yes-or-no answer, a pro-or-against attitude. Therefore, it is important to choose an empirical method that elicits perceived benefits and risks and explores multiple dimensions of the problem. How do patients feel about taking a medicine based on leftover embryos that not only relieves their symptoms but also repairs the damage, while the level of knowledge is low? It is not easy to answer such a question, but reality often has this complexity.

One method that can stage such complex considerations is a choice-based survey called Discrete Choice Experiments (DCE). With that method, we can investigate ethically sensitive issues and use the results to describe more fully the relative importance of ethical difficulties, values and preferences among stakeholders, as well as conflicts between ethical views. DCE provides an understanding of the balance between factors involved in different situations. In a new article in BMC Medical Ethics, my colleagues and I have investigated which factors are associated with the preferences of patients with Parkinson’s disease regarding embryonic stem cell-based treatments for the disease in the future. We invited patients to participate in a web-based choice-based experiment to assess the importance of the following factors: (1) type of treatment, (2) purpose of the treatment, (3) available knowledge about different types of treatment, (4) effect on symptoms and (5) the risk of serious side effects. The results showed that the fourth factor, “effect on symptoms,” was the most important factor in the choice of treatment option. Patients’ previous experience with treatment, side effects and advanced treatment therapy, as well as religious beliefs were associated with what they thought was most important, but not their view of what an embryo is. If you want to read more, you can find the article here: Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment.

These kinds of results from DCE studies can, in my opinion, help us to understand and frame ethical questions in ways that reflect how people think when multiple factors are at stake simultaneously. I believe that the more realistic complexity of such studies can contribute to more informed ethical considerations. I believe that they could also strengthen democratic processes by giving public conversation a background of more nuanced empirical findings.

Written by…

Jennifer Viberg Johansson, Associate Professor in Medical Ethics at Uppsala University’s Centre for Research Ethics & Bioethics.

Bywall, K.S., Drevin, J., Groothuis-Oudshoorn, C. et al. Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment. BMC Med Ethics 24, 83 (2023). https://doi.org/10.1186/s12910-023-00966-1

This post in Swedish

Ethics needs empirical input

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

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Patient views on treatment of Parkinson’s disease with embryonic stem cells

Stem cells taken from human embryos very early after fertilization can be grown as embryonic stem cell lines. These embryonic stem cells are called pluripotent, as they can differentiate into virtually all of the body’s cell types (without being able to develop into an individual). The medical interest in embryonic stem cells is related to the possibility of using them to regenerate damaged tissue. One disease one hopes to be able to develop stem cell treatment for is Parkinson’s disease.

In Sweden, it is permitted to use leftover donated embryos from IVF treatment for research purposes. However, not to produce medical products. The path towards possible future treatments is lined with legal and ethical uncertainties. In addition, the moral status of the embryo has been debated for a very long time, without any consensus on the matter being reached.

In this situation, studies of people’s perceptions of the use of human embryonic stem cells for the development of medical treatments become urgent. Recently, the first study of the perceptions of patients, the group that can become recipients, was published. It is an interview study with seventeen patients in Sweden who have Parkinson’s disease. Author is Jennifer Drevin along with six co-authors.

The interviewees were generally positive about using human embryonic stem cells to treat Parkinson’s disease. They did not regard the embryo as a life with human rights, but at the same time they saw the embryo as something special. It was considered that the embryo has great value for the couple who want to become parents and emphasized the importance of the woman’s or the couple’s free and informed consent to donation. As patients, they expressed interest in a treatment that did not limit everyday life through, for example, complicated daily medication. They were interested in better cognitive and communicative abilities and wanted to be more independent: not having to ask family members for support in everyday tasks. The effectiveness of the treatment was considered important and there was concern that stem cell treatment might not be effective enough, or have side effects.

Furthermore, concerns were expressed that donors could be exploited, for example poor and vulnerable groups, and that financial compensation could have negative effects. Allowing donation only of leftover embryos from IVF treatment was considered reassuring, as the main purpose would not be to make money. Finally, there was concern that the pharmaceutical industry would not always prioritize the patient over profit and that expensive stem cell treatments could lead to societal and global injustices. Suspicions that companies will not use embryos ethically were expressed, and some felt that it was more problematic to make a profit on products from embryos than on other medical products. Transparency around the process of developing and using medical stem cell products was considered important.

If you want to see more results, read the study here: Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study.

It can be difficult to draw general conclusions from the study and the summary above reproduces some of the statements in the interviews. We should, among other things, keep in mind that the interviews were conducted with a small number of patients who themselves have the disease and that the study was conducted in Sweden. The authors emphasize that the study can help clinicians and researchers develop treatments in ways that take into account patients’ needs and concerns. A better understanding of people’s attitudes can also contribute to the public debate and support the development of policy and legislation.

Pär Segerdahl

Written by…

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

Drevin, J., Nyholm, D., Widner, H. et al. Patients’ views on using human embryonic stem cells to treat Parkinson’s disease: an interview study. BMC Med Ethics 23, 102 (2022). https://doi.org/10.1186/s12910-022-00840-6

This post in Swedish

In dialogue with patients