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

Tag: Parkinson's disease

Ethical and legal reflections on ex-vivo human brain research

When researchers at Yale University announced a few years ago that they had successfully restored circulation and certain cellular functions in pig brains hours after death, the tabloid press immediately seized on the story. The papers created a sensationalist narrative around the discovery, with headlines such as: “Scientists breathe life into dead pigs in bizarre Frankenstein experiment.” I recently had the opportunity to attend a medical law conference and listen to a lecture by Stephen R. Latham, Director of the Interdisciplinary Center for Bioethics at Yale University, on how science has progressed from those initial pig experiments to human ex-vivo brain research. This technological leap raises bioethical and legal questions that go far beyond the simplistic visions of the popular media.

The perfusion system developed by Yale researchers represents a paradigm shift in neuroscience. During the procedure, oxygen, glucose, and infection-controlling antibiotics are delivered to post-mortem brains (9-15, and occasionally 17 hours after death). Oxygen transport is facilitated using a molecule derived from Canadian earthworms. This perfusion can reverse ischemic damage, restoring cellular and metabolic functions, while the blood-brain barrier remains intact and observable throughout. An important technical detail is that while the energy provided by the perfusion fluid (perfusate) is sufficient to restart cellular metabolism, it is not enough to cause the neurons to fire. As a “belts and suspenders” measure, the system also circulates propofol, a strong anesthetic, which inherently prevents neuronal activity. This model is of inestimable value in translational medicine, particularly in Alzheimer’s and Parkinson’s disease research. Unlike animal experiments or artificially grown organoids, this model uses actual human brains, typically 60-80 years old, which occasionally exhibit pathological changes. As a result, the off-target effects of potential therapies can be observed immediately and accurately, eliminating biases stemming from the incompatibility of animal models.

The deepest bioethical dilemma centers around the potential reawakening of consciousness in the ex-vivo brain. To ensure thar this does not happen, researchers monitor the perfused human brains using EEG (initially all of them, now through representative sampling), and the measurements prove that no organized electrical activity is present in the cerebral cortex. Since contemporary theories suggest that consciousness cannot exist without electrical activity, we know that the donor’s brain does not “wake up” and does not undergo subjective experiences. The current ethical consensus implies a short-term ban on research that would permit the return of any form of consciousness in human brains. The reason for this is rational and irrefutable: it is impossible to obtain valid informed consent from a donor, as one cannot predict what subjective experiences a disembodied, perfused brain would undergo. However, this ban paves the way for valuable clinical research of the kind discussed above, in which consciousness does not arise.

The technology also challenges the very definition of death. Under US law, death is defined as the complete and irreversible cessation of cardiopulmonary or whole-brain functions. Ex-vivo perfusion and modern resuscitation techniques show that biological “irreversibility” is relative, because science can now restore circulation and certain cellular functions after death. For example, during some transplant procedures, doctors restart a deceased patient’s heart to keep organs fresh, while deliberately blocking blood flow to the head. Because of this, a growing number of people in bioethics are questioning the traditional “dead-donor rule,” considering the harvesting of organs from patients who technically do not meet the legal definition of death but will never regain consciousness and have expressed a desire to donate. An alternative approach would be to view irreversibility not merely as a biological reality, but as a matter of choice. If the patient (or their family) previously directed that they do not want their vital functions or brain metabolism restored, then the condition becomes irreversible by virtue of the patient’s will – and this marks the actual boundary of death.

One of the most sensitive aspects of the research is the ethical procurement of brains from donors. Currently, donors are individuals who registered as organ donors during their lifetimes, but whose organs were deemed ineligible for transplantation at the time of death (e.g., due to disease). Families authorize the removal and use of the whole brain for perfusion research through Organ Procurement Organizations. However, the future, more transparent approach is to obtain advance informed consent directly from the donors while they are still alive, in accordance with an Institutional Review Board (IRB) approved protocol.

There is practically a complete legal vacuum in this area. Although certain standards regulate tissue donors’ consent or data management, there is very little specific law governing preclinical research on human tissue. Paradoxically, it is the researchers themselves who are most actively soliciting regulation. A clear framework would reduce the risk of legal liability, reassure investors, and, most importantly, maintain public trust. While formal legislation is delayed, professional groups must proactively step up by developing self-regulatory standards and ethical codes (so-called soft law) that they can present as authoritative to funders and research partners.

I am grateful to Professor Stephen R. Latham for the interesting and thought-provoking conversation at the conference. One of the things I learned was that technological development has once again outpaced legislation, and that interdisciplinary dialogue is essential to ensure that science does not cross the ethical boundaries that protect human dignity.

Arpad Karalyos

Written by…

Árpád Karalyos, visiting scholar at the Centre for Research Ethics & Bioethics and fifth-year law student at the Pázmány Péter Catholic University in Budapest, Hungary.

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

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

Using surplus embryos to treat Parkinson’s disease: perceptions among the Swedish public

The use of human embryos in stem cell research can create moral unease, as embryos are usually destroyed when researchers extract stem cells from them. If one considers the embryo as a potential life, this can be perceived as a human life opportunity being extinguished.

At the same time, stem cell research aims to support human life through the development of treatments for diseases that today lack effective treatment. Moreover, not everyone sees the embryo as a potential life. When stem cell research is regulated, policymakers can therefore benefit from current knowledge about the public’s attitudes to this research.

Åsa Grauman and Jennifer Drevin recently published an interview study of perceptions among the Swedish public about the use of donated embryos for the treatment of Parkinson’s disease. The focus in the interviews on a specific disease is interesting, as it emphasizes the human horizon of stem cell research. This can nuance the issues and invite more diverse reasoning.

The interviewees were generally positive about using donated surplus embryos from IVF treatment to develop stem cell treatment for Parkinson’s disease. This also applied to participants who saw the embryo as a potential life. However, this positive attitude presupposed a number of conditions. The participants emphasized, among other things, that informed consent must be obtained from both partners in the couple, and that the researchers must show respect and sensitivity in their work with embryos. The latter requirement was also made by participants who did not see the embryo as a potential life. They emphasized that people have different values and that researchers and the pharmaceutical industry should take note of this.

Many participants also considered that the use of embryos in research on Parkinson’s disease is justified because the surplus embryos would otherwise be discarded without benefit. Several also expressed a priority order, where surplus embryos should primarily be donated to other couples, secondarily to drug development, and lastly discarded.

If you want to see more results, read the study: Perceptions on using surplus embryos for the treatment of Parkinson’s disease among the Swedish population: a qualitative study.

I would like to mention that the complexity of the questions was also expressed in such a way that one and the same person could express different perceptions in different parts of the interview, and switch back and forth between different perspectives. This is not a defect, I would say, but a form of wisdom that is essential when difficult ethical issues are discussed.

Pär Segerdahl

Written by…

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

Grauman, Å., Drevin, J. Perceptions on using surplus embryos for the treatment of Parkinson’s disease among the Swedish population: a qualitative study. BMC Med Ethics 23, 15 (2022). https://doi.org/10.1186/s12910-022-00759-y

This post in Swedish

Ethics needs empirical input