Larger and smaller sized ethics

January 29, 2019

Pär SegerdahlEthics can be about big, almost religious questions. Should scientists be allowed to harvest stem cells from human embryos and then destroy the embryos? Ethics can also be about narrower, almost professional issues. How should the development of embryonic stem cell lines be regulated? The latter question is similar to the question: How should the aircraft industry be regulated?

Larger and smaller ethics can have difficulties understanding each other, even though they often need to talk. For example, larger ethics can be suspicious of medical research and the pharmaceutical industry, and overlook how meticulously responsible they most often are. And how rigorously supervised they are, as the aircraft industry. Neither the drug nor the aircraft industry can be carefree about safety issues!

Smaller ethics can also be suspicious of larger ethics. Medical research and industry, with their professional attitudes, can experience larger ethical questions as being as vague and distant as nebulae. This fact, that larger and smaller ethics have difficulties even hearing each other, creates the need for a simpler, more sincerely questioning attitude, which never settles within any limits, whether they are narrower or wider. Remember that even larger perspectives often degenerate into regulations of how people should think. They shrink.

Medical research and industry need regulation, it is as important as the safety work in the aircraft industry. However, we need also to think big about human life and life in general. In order to keep ethics alive, a beginner’s attitude is needed, constantly renewed sincerity. Does it sound difficult? All we need to do is to ask the questions we really wonder about, instead of hiding them behind a confident facade.

Nothing could be easier. The question is if we dare. The sincerest questions open up the biggest perspectives.

Pär Segerdahl

This post in Swedish

We like challenging questions - the ethics blog


The pharmaceutical industry and altruism

January 16, 2017

Pär SegerdahlI am currently thinking about a common gut reaction to the pharmaceutical industry. I sometimes have this reaction too, so this is an examination of my own reaction.

The reaction is a feeling of discomfort, when a central actor in the management of something as important as human health and disease is a multibillion-dollar industry with profit as overall goal.

Is it really possible to combine such a businesslike aim with a genuine desire to cure the sick?

Let us compare with another industry that radiates more compassionate desire to cure, namely, alternative medicine. Here too products are sold to people with various ailments. There is clearly a market and a business mindset. Yet the actors on this market radiate more love of mankind. It can sometimes even appear as if the products were manufactured and sold out of pure goodness!

What makes these business practices seem imbued with good will to cure? I suggest that it depends on the strong belief in the healing effects of the products. I do not deny that many of the products have beneficial effects. My point is only that beliefs about good effects are at the forefront and can make the provision of the products appear like an ethical act of noble actors.

The pharmaceutical industry is different from alternative medicine partly through being prohibited from being permeated with beliefs about the healing effects of the products. It is actually illegal for the pharmaceutical industry to act as nobly and compassionately as the actors within alternative medicine. It could invite quackery.

The pharmaceutical industry operates on a highly regulated market. There is specific legislation for pharmaceutical products and special authorities supervising the industry. Satisfying the quality and safety demands often requires decades of research and development. This means huge investment costs, which presupposes profits.

This is how we have solved the problem of providing safe and effective treatments through the health care system. By having a pharmaceutical industry that is not permeated with good faith and good intentions, but instead is highly regulated and supervised. The products must satisfy the quality requirements, period. Beliefs and good intentions are irrelevant.

Research, industry and healthcare together constitute a regulated system for managing health and disease. Within this system, researchers can be driven by curiosity, and industry by profit, while doctors want to cure their patients, and research participants want to support research that could lead to more effective treatments.

The point I am trying to make is that the gut reaction probably overlooks just this division of motives: In order for a whole system to work for the good, not every actor in the system needs to place good intentions first. It can rather pose a risk for the entire system.

There is no reason to glorify the pharmaceutical industry. Rather there are reasons to question it, for example, the marketing of products, which sometimes tries to create the faith that is prohibited in the development and approval of the products.

The industry is not altruistic. It is driven by profit. But through its place within the system it can make altruism and good will possible.

Pär Segerdahl

This post in Swedish

We challenge habits of thought : the Ethics Blog


Bioethics behind the facade: research and new thinking

January 28, 2015

Pär SegerdahlThe finished result easily becomes a picture of the process of achieving it. For example: We hear a Beethoven symphony and think that the genius had this magnificent composition in his head. He just needed to write it down.

As if the result existed from the beginning and only needed to be put on paper. I don’t know much about Beethoven’s working process, but doubt that it consisted in writing down already completed symphonies. Maybe, during a walk, a tiny idea entered his mind: a theme that made an impression on him, but that definitely was not the finished symphony. Thereafter, he explored the theme, attentive to where it wanted to go and letting it evolve in different forms and variations. Maybe he examined the theme at the piano.

Only gradually did this creative work shift to actually sitting down and composing. But still, as an exploration of the theme, albeit in the final phase of the process. And maybe it turned out that the theme worked better for a string quartet instead.

Bioethics is often misunderstood as we misunderstand Beethoven. We identify bioethics (and research ethics) with the finished result: with ethical guidelines, with the declaration of Helsinki, with models of consent, with the system of ethical review etcetera.

Bioethicists then appear like people who just put ethical rules on paper and establish bureaucratic systems to check that they are followed by researchers.

Bartha M. Knoppers recently questioned that image, in an article with the significant title:

Ethical frameworks for biomedical research originate in processes of ethical research and thinking, often in dialogue with researchers in the field, and with patients and the public. Behind the facade, bioethics is an art of conversation as well as explorative research and new thinking. This work is not the least self-critical, for the ethical frameworks need to be constantly modified and sometimes partially dismantled.

An example of this work behind the facade is a new book on the regulation of biobanking, edited by Deborah Mascalzoni at CRB:

In this book, a number of researchers present their explorations. It gives you insight into the work processes and the conversations and debates behind the regulation of research.

One principal problem raised in the book is that regulatory systems have become increasingly complex and opaque. Should we then create even more regulation?

Deborah Mascalzoni thinks that ethical research is more than just researchers following rules written by bioethicists. Instead of facing new challenges with even more regulation, she points out that all of us can think ethically, and that scientists have a moral responsibility to reflect on how they develop their research practices.

Ethics need not be a burden for research but can be a living concern within it. It can grow and flourish with the research practices, if we dare to do what Beethoven did: trust that seemingly insignificant thoughts and ideas can grow into something beautiful and real.

Pär Segerdahl

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


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