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

Month: March 2016

Notebook, not Facebook

Pär SegerdahlI take the liberty of striking a blow for the notebook.

I miss the voices people develop when they use to keep their own notes. The conversation with yourself gives depth – “I have thought about this” – to your conversation with others.

The erosion of collegial structures at universities is worrisome. But what especially concerns me is the notebook culture, which I believe needs to be rediscovered. Without own notebooks, no real education and no real knowledge.

It isn’t about withdrawing to one’s study to write esoteric notes. It is about developing one’s own groundwork in the life with others. It is developed in (temporary) seclusion, in response to life with others. Then you can converse, because you will have something to say, something of your own.

Cultures deepen through the rumination in diaries and notebooks. Without this simple practice, cultures erode and voices sound thinner. We need to carry culture on our own shoulders.

Kafka recorded in one of his notebooks a picture that I often think of. It is the image of messengers rushing around with messages that they received from other messengers. But it turns out that there is no author of these messages. There are only messengers. I see this as an image of a world without notebooks.

Kant spoke of human authority and autonomy. In Kafka’s picture there is no authority and no autonomy, for no one is the author of their own words: just the messengers of words from other messengers. For once being the author, not only the messenger of what other messengers passed on: wouldn’t that be something!

Become the author of your own words by taking notes! The notebook is the origin of all messages worth communicating. I am a notebook individualist.

To think and reflect is not only about having time. It is about using the time to converse with yourself. That conversation is lifelong. When you converse with others, you convey the lifelong conversation with yourself.

Artists have probably more than others retained the practice of using sketchbooks, of regularly practicing music more informally and privately, of making drafts of stories and novels. That practice gives them a basis to create. We have much to learn from the artists. They are the last to maintain culture, through the sketchbooks in which they constantly scribble.

Nothing is more responsible and authoritative than keeping your own notes. The notes don’t have to be brilliant or groundbreaking. Only your own sincere words with yourself. That is originality! Through the notebook you develop the integrity that is worth defending. And that is worth sharing with others, who of course also have notebooks.

I don’t want to read your Facebook updates, but perhaps your notes. You read mine here. So get a notebook if you don’t already have one. It is the most radical thing you can do today.

Pär Segerdahl

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Critique of the motivation for dynamic consent to biobank research

Pär SegerdahlBiobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown research projects x, y, z.

While some argue that broad consent for future research is specific enough to be genuine consent to something – one can inform about the framework that applies to the research – others argue that biobank research undermines the autonomy of research participants. Something must therefore be done about it.

Dynamic consent is such a proposed measure. The idea is that participants in biobank research, through a website, will be kept continuously informed about planned research, and continually make decisions about their participation. Through this IT measure, participants are placed at the center of decision making process rather than transferring all power to the researchers. Dynamic consent empowers research participants and supports their autonomy, it is claimed.

In an article in the journal Bioethics, Linus Johnsson and Stefan Eriksson critically examine the understanding of autonomy in the debate on dynamic consent.

First, the authors argue that autonomy is misunderstood as a feat. Autonomy is rather a right people have to decide for themselves what to do in situations that matter to them.

Second, they argue that the concept of autonomy is used too broadly, hiding important distinctions. In fact, three different ways of respecting people are conflated:

  1. Autonomy: respecting people’s right to decide for themselves about what to do.
  2. Integrity: respecting people’s right to draw the lines between private and social life.
  3. Authority: respecting people’s right to take responsibility for themselves, for their families, and for their relations to society.

Authority is respected by empowering people: by giving them the tools they need to live responsibly. In dynamic consent, the website is such a tool. It empowers participants to act as responsible citizens concerning the planning and carrying out of research in society.

By separating three forms of respect which are confused as “autonomy,” the authors can propose the following critical analysis of the motivation for dynamic consent. Rather than respecting people’s right to decide for themselves about what to do, the aim is to empower them. But if the empowerment forces them to sit in front of the computer to be informed, it violates their integrity.

Such intrusion could be justified if medical research were a suitable arena for people’s empowerment as citizens – an assumption which the authors point out is doubtful.

Pär Segerdahl

Johnson, L. and Eriksson, S. 2016. “Autonomy is a right, not a feat: How theoretical misconceptions have muddled the debate on dynamic consent to biobank research.” Bioethics, DOI: 10.1111/bioe.12254

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Searching for consciousness needs conceptual clarification

Michele FariscoWe can hardly think of ourselves as living persons without referring to consciousness. In fact, we normally define ourselves through two features of our life: we are awake (the level of our consciousness is more than zero), and we are aware of something (our consciousness is not empty).

While it is quite intuitive to think that our brains are necessary for us to be conscious, it is tempting to think that looking at what is going on in the brain is enough to understand consciousness. But empirical investigations are not enough.

Neuroscientific methods to investigate consciousness and its disorders have developed massively in the last decades. The scientific and clinical advancements that have resulted are impressive. But while the ethical and clinical impacts of these advancements are often debated and studied, there is little conceptual analysis.

I think of one example in particular, namely, the neuroscience of disorders of consciousness. These are states where a person’s consciousness is more or less severely damaged. Most commonly, we think of patients in vegetative state, who exhibit levels of consciousness without any content. But it could also be a minimally conscious state with fluctuating levels and contents of consciousness.

How can we explain these complex conditions? Empirical science is usually supposed to be authoritative and help to assess very important issues, such as consciousness. Such scientific knowledge is basically inferential: it is grounded in the comparative assessment of residual consciousness in brain-damaged patients.

But because of its inferential nature, neuroscience takes the form of an inductive reasoning: it infers the presence of consciousness starting from data extracted by neurotechnology. This is done by comparing data from brain damaged patients with data from healthy individuals. Yet this induction is valid only on the basis of a previous definition of consciousness, a definition we made within an implicit or explicit theoretical framework. Thus a conceptual assessment of consciousness that is defined within a well-developed conceptual framework is crucial, and it will affect the inference of consciousness from empirical data.

When it comes to disorders of consciousness, there is still no adequate conceptual analysis of the complexity of consciousness: its levels, modes and degrees. Neuroscience often takes a functionalist account of consciousness for granted in which consciousness is assumed to be equivalent to cognition or at least to be based in cognition. Yet findings from comatose patients suggest that this is not the case. Instead, consciousness seems to be grounded on the phenomenal functions of the brain as they are related to the resting state’s activity.

For empirical neuroscience to be able to contribute to an understanding of consciousness, neuroscientists need input from philosophy. Take the case of communication with speechless patients through neurotechnology (Conversations with seemingly unconscious patients), or the prospective simulation of the brain (The challenge to simulate the brain) for example: here scientists can give philosophers empirical data that need to be considered in order to develop a well-founded conceptual framework within which consciousness can be defined.

The alleged autonomy of empirical science as source of objective knowledge is problematic. This is the reason why philosophy needs to collaborate with scientists in order to conceptually refine their research methods. On the other hand, dialogue with science is essential for philosophy to be meaningful.

We need a conceptual strategy for clarifying the theoretical framework of neuroscientific inferences. This is what we are trying to do in our CRB neuroethics group as part of the Human Brain Project (Neuroethics and Neurophilosophy).

Michele Farisco

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