Stem cell therapy remains a form of treatment

February 27, 2017

Pär SegerdahlThere is a picture of stem cell therapy: It is in harmony with the body’s own way of functioning. Damaged tissue is regenerated as the body always regenerates tissue: through stem cells maturing into new body cells.

Patients can then hope for a body without a trace of disease: a healed body that takes care of itself as a healthy body does. It is almost as if we were not dealing a treatment at all, for the body restores itself, as it always does.

Stem cell therapy is certainly an important step towards effective treatment of several currently incurable diseases. The methods can also be said to be based on the body’s own way to regenerate tissue.

Nevertheless, I think we should emphasize that stem cell therapies are treatments next to others, with risks and benefits. Cells are transplanted into patients whose immune system can react. The implants may need to be checked regularly, or even be replaced. The transplantation can go wrong. And so on.

Stem cell therapy does not “transcend” all disease treatment hitherto by supporting the body’s own way of healing itself. We are still dealing with treatments of patients, rather than with “salvation from disease.”

Rhetoric of salvation is dangerous. It invites magicians and our faith in them. It justifies sacrifices to the benefit of Mankind. It disturbs our judgement.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Ethics and law of stem cell treatment of diabetes

December 21, 2016

Pär SegerdahlMany people support in various ways medical research, which they perceive as urgent in view of the needs of various patient groups. But patients typically won’t benefit from research unless the results are translated into development of medical products.

Type 1 diabetes is an incurable disease that requires daily life-sustaining treatment and strict dietary rules. Disease onset usually occurs at an early age.

In Sweden, about 50 000 people have this form of diabetes and of these around 8 000 are children. In type 1 diabetes, the immune system attacks the insulin-producing cells. Without insulin the body cells cannot use glucose for energy, and the sugar level in the blood rises. Energy is recovered instead from fat and protein, which causes waste products that can cause diabetic coma and attacks on vital organs.

Today, diabetes is treated with daily insulin injections, or by using an insulin pump. This requires continuous measurement of blood sugar levels, as incorrect doses of insulin entails risks and can be life-threatening. It is not easy to live with diabetes.

An alternative treatment, which is still at the research stage, is to generate new insulin-producing cells using human embryonic stem cells. The insulin-producing cells detect blood sugar levels and regulate the secretion of insulin. In order not to be attacked by the immune system, the transplanted cells are encapsulated in a protective material. It may become easier to live with diabetes.

But research alone doesn’t treat diabetes. Encapsulated insulin-producing cells need to be produced and made available also to patients; not only to research participants. But this is a big step and a host of ethical and legal issues, including embryo donation, patentability and consent, need to be examined and discussed.

The Swedish Research Council recently granted funding for a project to examine these issues. The project is led by Mats G. Hansson at CRB and is a collaboration with Olle Korsgren, professor of transplantation immunology, as well as with lawyers Anna-Sara Lind and Bengt Domeij, and philosophers and ethicists Jessica Nihlén Fahlquist and Pär Segerdahl.

The step from stem cell research to available treatments requires reflection. I look forward to start thinking about the ethical and philosophical questions.

Pär Segerdahl

This post in Swedish

Approaching future issues - the Ethics Blog

Two researchers in neuroethics

December 5, 2016

Our neuroethics group at CRB currently seek two postdoctoral researchers to work in the Human Brain Project (European Commission Future and Emerging Technologies Flagship Project). The positions have different focus.

One research task focuses on the role of contexts and cultural imprinting in understanding the brain’s functional architectures. Read more and apply.

The second research task focuses on philosophical and ethical challenges of modelling cognitive processes in silica. Read more and apply.

Employments are temporary, renewable halftime positions, starting February 1, 2017 (or as otherwise agreed). If you have questions, please contact Kathinka Evers.

Application deadline is January 12, 2017.

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

Did medicine save the life of ethics?

October 18, 2016

Pär SegerdahlAbout thirty-five years ago, Stephen Toulmin wrote an article on the topic: How medicine saved the life of ethics. I think it is still worth reading.

Toulmin argued roughly as follows:

During the first six decades of the 1900s, ethics wasn’t feeling well at all. One might say that it suffered from moral aphasia: it couldn’t talk sensibly about real ethical problems.

While moral philosophers were preoccupied with formally specifying what distinguishes moral questions and judgements in general, without taking sides on specific ethical issues, ethics debaters outside of academic philosophy were trapped in the opposition between dogmatism and relativism.

Dogmatists referred respectfully to universal principles and authoritative religious systems, while relativists and subjectivists dismissed the absolute claims with reference to anthropological and psychological findings about differences in people’s attitudes.

In short, while philosophers analyzed what characterizes morality in general and left living ethical issues to their fate, dogmatists and relativists fought fruitlessly about whether these issues have absolute answers, based on universal principles, or if the answers are relative to cultural and individual factors.

In this near-death state, medicine came to the rescue. Medical practices gave rise to very definite ethical questions that insisted on answers and guidance. When philosophers in the 1960s began to pay attention to these issues, ethics was rescued from the life-threatening condition in which it found itself.

Toulmin suggests that medical ethics saved the life of ethics through four resuscitation efforts:

By focusing on situations, needs and interests, which are more objectively given than the attitudes, feelings and desires that anthropology and psychology were interested in. Whether a person’s actions threaten another’s health can be discussed in objective terms, as opposed to questions about habits and tastes.

(Here I think of the emergence of empirical ethics, where more objective aspects of ethical problems are explored in various kinds of studies.)

By analyzing concrete cases, instead of striving towards the universal principles to which dogmatists referred. Toulmin compares medical ethics to medical practice. Diseases described only in general terms become abstract and without specific relevance: they acquire practical relevance only for health professionals who learned the art of identifying real-life cases of the diseases. The same applies to ethics, which requires an art of identifying real-life cases of, for example, “disrespect”; otherwise ethical concepts become abstract and without practical significance.

(Here I think, among other things, of the emergence of ethics rounds in the ethics training of healthcare staff.)

By focusing on professional activities, giving rise to definite responsibilities and duties. To understand our duties to each other, we cannot assume an abstract image of humans as individuals. We live in communities and act in forms of life that shape our obligations. Issues in medical ethics are often about obligations shaped by professional roles and contexts.

(Here I think of the previous blog post, about boundaries between public health and healthcare, which sometimes might be transgressed. Practices such as research, healthcare and industry shape different types of obligation and responsibility, which it sometimes can be difficult to keep separate or balance.)

By reintroducing assessments of equity and personal relationships in ethics, assessments of how the circumstances alter the cases. What, in a doctor-patient relationship, is a routine examination, can outside of this context give us reason to speak of an assault. Circumstances alter the cases, and Toulmin compares medical ethics with how courts make assessments of what is just and reasonable between people, given what we know about them.

(Here I think of how medical ethics increasingly is done in dialogue with patients, health professionals and researchers, to better understand the circumstances.)

– Why do I find Toulmin’s article worth reading today?

Among other things, because it provides a broad and realistic description of ethics as a practice and art, in time and in particular contexts, partly comparable to the doctor’s or the lawyer’s practice and art. The article also makes the development of bioethics understandable, such as the emergence of empirical ethics, of ethics rounds, and of the endeavor to work in dialogue with stakeholders and with the professions.

The article also nuances a simplified understanding of how ethical questions are answered. We are inclined to think that empirical studies give us the facts. Then we add general moral principles and derive the ethical conclusions. This could resemble a relapse into dogmatism, where religious principles have been replaced by secular philosophical principles.

Finally, I want to mention that the article sheds light on a problem that we encountered in some empirical studies lately. Colleagues have made ethical education interventions in different healthcare professions. The participants appreciated the practical exercises and found them instructive. But no clear effect of the exercises could be measured by comparing results of knowledge tests before and after the interventions.

Toulmin’s description of how medicine saved the life of ethics may suggest an explanation. The exercises were practical and concerned cases with which the participants were familiar. But the knowledge tests were formulated roughly in those general terms which constituted such a large part of the illness of ethics. The interventions might have been vitalizing, but not the method of measurement.

Pär Segerdahl

This post in Swedish

We think about bioethics :

Genetic screening before pregnancy?

June 20, 2016

Pär SegerdahlGenetic diseases can arise in strange ways. So-called recessive diseases require that both parents have the gene for the disease. The parents can be healthy and unaware that they are carriers of the same non-dominant disease gene. In these cases, the risk that the child develops the disease is 25 percent.

In families with a history of some recessive disease, as well as in communities where some serious recessive disease is common, genetic screening before pregnancy is already used – to determine whether couples that are planning a child are, so to speak, genetically compatible.

As these genetic tests have become more reliable and affordable, one has begun to consider offering preconception genetic screening to whole populations. Since one doesn’t know then exactly which genes to look for, it’s not just about screening more people, but also about testing for more recessive traits. This approach has been termed expanded carrier screening (ECS).

In the Netherlands, a pilot project is underway, but the ethical questions are many. One concerns medicalization, the risk that people begin to think of themselves as being more or less genetically compatible with each other, and feel a demand to test themselves before they form a couple and plan children.

Sweden has not yet considered offering expanded carrier screening to the population and the ethical issues have not been discussed. Amal Matar, PhD student at CRB, decided to start investigating the issues in advance. So that we are prepared and can reason well, if preconception expanded carrier screening is suggested.

The first study in the PhD project was recently published in the Journal of Community Genetics. Interviews were made with clinicians and geneticists, as well as with a midwife and a genetic counselor, to examine how this type of genetic screening can be perceived from a Swedish health care perspective.

Ethical issues raised during the interviews included medicalization, effects on human reproductive freedom, parental responsibility, discrimination against diseased and carriers, prioritization of resources in health care, as well as uncertainties about what to test for and how to interpret results.

The study serves as an empirical exploration of the ethical issues. Some of these issues will be examined philosophically further on in Amal Matar’s project.

(Read more about Amal Matar and her work at CRB here.)

Pär Segerdahl

Matar, A., Kihlbom, U., Höglund, A.T. Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS) – a qualitative study. Journal of Community Genetics, DOI 10.1007/s12687-016-0268-2

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We like challenging questions - the ethics blog

Distance between media representations and public perceptions of synthetic biology

May 24, 2016

Mirko AncillottiMedia do not generally represent the general public’s views on synthetic biology nor, regrettably, render a balanced or thoughtful picture of the field. Until now media cannot represent a starting point nor can they facilitate a public debate on synthetic biology, which would be desirable for a responsible and responsive development of the field.

In a previous post, written together with Josepine Fernow, I expressed some concerns about the way mainstream media report synthetic biology. Stories told by the journalists are often obviously adhering to the versions of their sources, mainly synthetic biologists. As a consequence, the broad majority of the reports are uncritically positive and optimistic about the field and its potentials.

In a recent article I investigated, together with researchers from The Netherlands, Austria, and Germany, whether this sort of journalistic passivity is specific to Swedish media or if this is a common trend. Well, in case some of you may wonder, the answer is that it is a common trend. Although I cannot claim that it is a global trend, it is a trend in at least 13 European countries and in the US.

But how do different audiences react to what synthetic biology does and can potentially do? Are they also as supportive and progressive as the stories told by the journalists (or, rather, recycled by the journalists)? This is what we tried to understand.

The Meeting of Young Minds is an event which was organized by the Rathenau Instituut in 2011 and 2012, where young synthetic biologists (students) met and debated with spokespersons of Dutch political youth organizations. The analysis of the event showed that positive expectations and an open attitude towards synthetic biology could certainly be found among the prospective politicians. However, concerns about the environment were expressed, as well as about the concept of designing new forms of life.

But of course, political organizations are not neutral and cannot be assumed to mirror general public views.

What happens when we turn our attention to the general public? Participants in citizens’ panels in Austria tended to focus primarily on the challenges and risks presented by synthetic biology and expressed only a mild enthusiasm for its potential applications. Noteworthy is that support for synthetic biology was always conditional to a number of demands, primarily transparency and information, which were defined as essential. Austrian citizens’ experiment of public engagement revealed also a rather worrisome distrust towards scientists and policy makers, coupled with a sense of resignation towards the inevitability of scientific and technological progress. Similar studies in the UK, Austria, and the US showed that public attitudes are either balanced or mainly negative towards synthetic biology.

These differences between media representations and public perceptions indicate a need for more responsible journalism about synthetic biology.

Mirko Ancillotti

(You can read more about Mirko’s work at CRB here.)

Ancillotti M., Rerimassie V., Seitz S. and Steurer W. 2016 “An update of public perceptions of synthetic biology: still undecided?” NanoEthics, DOI: 10.1007/s11569-016-0256-3

This post in Swedish

We care about communication - the Ethics Blog

Direct brain communication: a new book

May 17, 2016

Pär SegerdahlImages of the brain, created with advanced technology, are known to most of us. But progress in neuroscience is fast. Less familiar are new technical opportunities to communicate directly with the brain … or however you put it!

Even the unconscious brain is alive. It has been possible to depict responses in the “unconscious” brain to what occurs in its environment. In some cases one has been able to establish communication, where the “unconscious” patient answers yes/no-questions by thinking of one thing if the answer is “yes” and on another thing if the answer is “no.” This activates different parts of the brain. Since researchers/doctors can detect which part of the brain is activated, the patient can answer questions and communicate with the outside world. (Here is an earlier post on this.)

Other examples of this development are new interfaces between brain and computer, where people learn to control a computer, not through the muscles, but via electrodes connected in the brain. People who cannot communicate verbally can thus get computer support. They can also learn to control prostheses. The brain is obviously exceptionally plastic and interactive!

A new anthology, with Michele Farisco and Kathinka Evers from CRB as editors, systematically assesses the philosophical, scientific, ethical and legal issues that this development implies: Neurotechnology and Direct Brain Communication (Routledge, 2016).

The book addresses scientific and clinical implications of the possibility to communicate with patients who may not be quite as unconscious as we thought. Perhaps we should rather talk about altered states of consciousness. But also infant care is discussed, as well as ethical and legal issues about authority, informed consent and privacy.

The book is written for researchers and graduate students in cognitive science, neurology, psychiatry, clinical psychology, medicine, medical ethics, medical technology, neuroethics, neurophilosophy and philosophy of mind. It may interest also healthcare professionals and a broader public fascinated by the mind.

Michele Farisco and Kathinka Evers both work in the European flagship project, Human Brain Project.

(You find more information about the book and about the editors here.)

Pär Segerdahl

This post in Swedish

We recommend readings - the Ethics Blog

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