The Ethics Blog

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

Year: 2015 (Page 4 of 5)

Experts on assignment in the real world

14 April, 2015 / / 0 Comments

Pär SegerdahlExperts on assignment in the real world cease in part to be experts. Just consider computer experts who create a computer system for the tax authorities, or for a bank, or for a hospital.

In order for these systems to work on location, the computer experts need to be open to what they don’t know much about: the unique activities at the tax authorities, or at the bank, or at the hospital.

Computer experts who aren’t open to their non-expertise on the site where they are on assignment perform worse as experts and will deliver inferior systems.

Experts can therefore not in practice be only experts. If one exaggerates one’s role as an expert, one fails on assignment in the real world.

This should apply also to other forms of expertise. My guess is that legal experts almost always find themselves in this precarious situation of being experts in a reality that constantly forces them to open themselves to their non-expertise. In fact, law appears to be an occupation that to an unusually high degree develops this openness systematically. I admire how legal experts constantly learn about the multifarious realities they act in.

Jurists should be a role model for computer experts and economic experts: because they methodically manage their inevitable non-expertise.

This post indicates the spirit in which I (as legal non-expert) took the liberty to question the Swedish Data Inspection Board’s shutting down of LifeGene and more recent rejection of a proposed law on research databases.

Can one be an expert “purely” on data protection? I think not. My impression is that the Data Inspection Board, on assignment in the world of research, didn’t open itself to its non-expertise in this reality. They acted (it seems to me) as if data protection issues could be handled as a separate field of expertise, without carefully considering the unique conditions of contemporary research and the kinds of aims that research initiatives can have.

Perhaps the temptation resides in the Board’s role as a public body: as an authority with a seemingly “pure” mission.

Pär Segerdahl

We like broad perspectives : www.ethicsblog.crb.uu.se

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Neuroethics: new wine in old bottles?

7 April, 2015 / / 0 Comments

Michele FariscoNeuroscience is increasingly raising philosophical, ethical, legal and social problems concerning old issues which are now approached in a new way: consciousness, freedom, responsibility and self are today investigated in a new light by the so called neuroethics.

Neuroethics was conceived as a field deserving its own name at the beginning of the 21st century. Yet philosophy is much older, and its interest in “neuroethical” issues can be traced back to its very origins.

What is “neuroethics”? Is it a new way of doing or a new way of thinking ethics? Is it a sub-field of bioethics? Or does it stand as a discipline in its own? Is it only a practical or even a conceptual discipline?

I would like to suggest that neuroethics – besides the classical division between “ethics of neuroscience” and “neuroscience of ethics” – above all needs to be developed as a conceptual assessment of what neuroscience is telling us about our nature: the progress in neuroscientific investigation has been impressive in the last years, and in the light of huge investments in this field (e.g., the European Human Brain Project and the American BRAIN Initiative) we can bet that new  striking discoveries will be made in the next decades.

For millennia, philosophers were interested in exploring what was generally referred to as human nature, and particularly the mind as one of its essential dimensions. Two avenues have been traditionally developed within the general conception of mind: a non-materialistic and idealistic approach (the mind is made of a special stuff non-reducible to the brain); and a materialistic approach (the mind is no more than a product or a property of the brain).

Both interpretations assume a dualistic theoretical framework: the human being is constituted from two completely different dimensions, which have completely different properties with no interrelations between them, or, at most, a relationship mediated solely by an external element. Such a dualistic approach to human identity is increasingly criticized by contemporary neuroscience, which is showing the plastic and dynamic nature of the human brain and consequently of the human mind.

This example illustrates in my view that neuroethics above all is a philosophical discipline with a peculiar interdisciplinary status: it can be a privileged field where philosophy and science collaborate in order to conceptually cross the wall which has been built between them.

Michele Farisco

We transgress disciplinary borders - the Ethics Blog

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Is it ethical that uninformed members of the public decide just how bad your disability is? (By Terry Flynn)

31 March, 2015 / / 0 Comments

Terry FlynnLast time I raised the possibility of changing child health policy because teenagers are more likely than adults to view mental health impairments as being the worst type of disability. However, today I consider adults only in order to address a more fundamental issue.

Imagine you had an uncommon, but not rare, incurable disease that caused you to suffer from both “moderate” pain and “moderate” depression and neither had responded to existing treatments. If policy makers decided there were only enough funds to try to help one of these symptoms, who decides which should get priority?

In most of Europe, perhaps surprisingly, it would not be you the patient, nor even the wider patient group suffering from this condition. It is the general population. Why? The most often quoted reason will be familiar to those who know the history of the USA: “no taxation without representation”. Tax-payers supposedly fund most health care and their views should decide where this money is most needed. If they consider pain to be worse than depression, then health services should prioritise treatment for pain.

Thus, many European countries have conducted nationally representative surveys to quantify their general public’s views on various health states. Unfortunately Swedish population values were only published last year, almost two decades after the first European country published theirs. Although late, these Swedish population values raise a disturbing issue.

Suppose the general population is wrong?

Why might this be? Many people surveyed are, and always have been, basically healthy. How do they know whether depression is better or worse than pain? In fact, these people tend to say pain would be worse, whilst patients who have experienced both say the opposite.

The Swedish general population study was large and relatively well equipped to investigate how people in ill health value disability. And, indeed, they do value it differently than the average healthy Swedish person.

So is it ethical to disenfranchise patients in order that all citizens, informed or not, have a say?

Why not use the views of patients instead?

Well actually the stated policy in Sweden is that the health values ideally should come from the individuals affected by the health intervention (patients). So Sweden now has the information required to follow its own health policy aims. Perhaps it’s time politicians were asked if it is ethical to prioritise pain over mental health, just because various general populations thought this is so.

As a final thought, I return to the issue of “what funds healthcare”? You may be surprised to learn that the “general taxation” answer is wrong here too. But that strays beyond health care and ethics and into the dark heart of economics, which I will therefore discuss elsewhere next week!

Terry Flynn

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Being humans when we are animals

25 March, 2015 / / 0 Comments

Pär SegerdahlMost people know that humans are animals, a primate species. Still, it is difficult to apply that knowledge directly to oneself: “I’m an animal”; “My parents are apes.”

– Can you say it without feeling embarrassed and slightly dizzy?

In a recent paper I explore this difficulty of “bringing home” an easily cited scientific fact:

Why does the scientific “fact” crumble when we apply it directly to ourselves?

I approach this difficulty philosophically. We cannot run ahead of ourselves, but I believe that’s what we attempt if we approach the difficulty theoretically. Say, by theorizing the contrast between humans and animals as an absolute presupposition of human language that science cannot displace.

Such a theory would be as easy to cite as the “fact” and wouldn’t touch our difficulty, the dizziness we feel.

Instead, I explore a personal experience. When I visited a laboratory for ape language research, an ape named Panbanisha told me to be QUIET and later called me a MONSTER. Being reprimanded by an ape made me dizzy about my humanness and about her animality.

How did the dizziness arise? After spending some time with the apes, the vertigo disappeared. How did it disappear?

That’s investigated in the paper by asking further questions, and by recollecting aspects of the meeting with Panbanisha to which those questions drew my attention. The paper offers a philosophical alternative to theory.

Trust your uncertainty and follow your questions!

Pär Segerdahl

Understanding enculturated apes - the ethics blog

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Moody teenagers? Giving them a greater say in health policy might solve this (By Terry Flynn)

18 March, 2015 / / 0 Comments

Terry FlynnWe have all heard of moody teenagers. Maybe we have them, or can remember being one. Recent research with my Australian colleagues suggests they may genuinely have more difficulty living with poor mental health than adults do.

Specifically, compared to the general public aged 18+, they are more likely to view mental health related impairments as being worse than physical disabilities.

This is not just an academic curiosity – if true, it means society is probably under-investing in child mental health. To explain why, we must first understand how most European countries decide on health funding priorities.

In general, disabilities with the greatest capacity to benefit from treatment are prioritised. To find out whether pain, depression, or some other, physical, impairment to health is worst – and therefore has the greatest potential benefit from treatment – nations conduct large population-based surveys. These require adults to make choices between lots of possible impaired health states in order to find out just how bad these are, relative to each other.

Of course, people often disagree on what is worst, and by how much, so decisions must be made as to whose values matter most. European nations generally agree that it is unethical to allow the rich to dictate what disabilities are most deserving of resources. Instead of “one € one vote”, it is “one person one vote”: taking a simple average of every adult’s values does this naturally.

Whilst this sounds fair and democratic in terms of process, it could be leading to uncomfortable outcomes for our moody teenager. Why? Well, if poor mental health is genuinely worse for teenagers than adults believe it to be then mental health interventions might not get funded: for example, if adults think pain is much worse, pain medications will be prioritised instead. This is because only adults are being asked for their health values, not teenagers.

So perhaps adults just don’t remember what it’s like to be young and we should use the teenagers’ values for health interventions that affect them?

Maybe not. There is a saying “age brings wisdom” and perhaps adults’ greater experience of illness means their values for mental health impairments are the correct ones. Maybe younger people have simply not experienced enough in life to know what aspects of illness are really worst. After all, immaturity is one reason why younger teenagers are not allowed to vote.

The ethical issues surrounding at what age teenagers can have sex, vote and make independent decisions in public life all become relevant here. However, “one person one vote” has one more disturbing implication that is relevant for people of all ages. By taking an average of everyone’s views, national health state value surveys include lots of healthy people who have no idea what it is like to live with severe illness. Does this matter? Well, it turns out that to the depressed patient in desperate need of a new anti-depressant it probably does.

Patients and the general public tend to disagree on which is worst – extreme pain or extreme depression. The general public gets the final say and my next blog entry will discuss how and why we might use the health values of patients themselves in priority setting instead.

Terry Flynn

We want to be just - the Ethics Blog

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Openness as a norm

11 March, 2015 / / 0 Comments

Pär SegerdahlWhy should scientists save their code keys as long as 20 years after they conducted their study, the Swedish Data Inspection Board apparently wonders. In its opinion to a proposed new Swedish law on research databases, it states that this seems too long a period of time.

Yet, researchers judge that code keys need to be saved to connect old samples to new registry data. The discovery of a link between HPV infection and cervical cancer, for example, could not have been made with newly collected samples but presupposed access to identifiable samples collected in the 1960s. The cancer doesn’t develop until decades after infection.

New generations of researchers are beginning to perceive it as an ethical duty to make data usable for other scientists, today and in the future. Platforms for long-term data sharing are being built up not only in biobank research, but also in physics, in neuroscience, in linguistics, in archeology…

It started in physics, but has now reached the humanities and the social sciences where it is experienced as a paradigm shift.

A recent US report suggests that sharing data should become the norm:

Research is obviously changing shape. New opportunities to manage data mean that research is moving up an IT-gear. The change also means a norm shift. Data are no longer expected to be tied to specific projects and research groups. Data are expected to be openly available for a long time – Open Access.

The norm shift raises, of course, issues of privacy. But when we discuss those issues, public bodies can hardly judge for researchers what, in the current vibrant situation, is reasonable and unreasonable, important and unimportant.

Perhaps it is profoundly logical, in today’s circumstances, to give data a longer and more open life than in the previous way of organizing research. Perhaps such long-term transparency really means moving up a gear.

We need to be humbly open to that possibility and not repeat an old norm that research itself is leaving behind.

Pär Segerdahl

Approaching future issues - the Ethics Blog

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Biobank news

3 March, 2015 / / 0 Comments

Pär SegerdahlThe first newsletter for 2015 from CRB and BBMRI.se is now available for reading:

The main news item, by Anna-Sara Lind, is about the still unclear status for a new European data protection regulation (intended to replace the old directive).

You’ll also find items by Josepine Fernow about our blog books, about a newly released anthology on biobank regulation (edited by Debora Mascalzoni), and information about a new online course in research ethics (developed by Stefan Eriksson and given for the first time next autumn).

You’ll also find a link to the PDF version of the newsletter.

Pär Segerdahl

We recommend readings - the Ethics Blog

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The need of a bird’s-eye view

25 February, 2015 / / 0 Comments

Pär SegerdahlIn the previous blog post I wrote about the tendency in today’s research to build common research platforms where data are stored and made open: available for future research, meta-analysis and critical scrutiny of published research.

The tendency is supported at EU level, by bodies responsible for research. Simultaneously, it is obstructed at EU level, by other bodies working with data protection.

The same hopeless conflict can be seen in Sweden, where the Swedish Data Inspection Board time and again stops such efforts or criticizes suggestions for how to regulate them. This month the Data Inspection Board criticized a proposed law on research databases.

It may seem as if the board just dryly listed a number of points where the proposal is inconsistent with other laws or allowed unreasonable infringement of privacy. At the same time, the Data Inspection Board seems alien to the new way of organizing research. Why on earth should researchers want to save so much data so damn long?

How can we handle these conflicts between public bodies that each has his own little mission and thus its own limited field of vision?

Pär Segerdahl

We want to be just - the Ethics Blog

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Open research platforms and open data

11 February, 2015 / / 0 Comments

Pär SegerdahlToday, I recommend reading about two major changes in current research. Both changes are reflected in the December issue of the newsletter:

The changes concern researchers’ relation to their material.

The first change has been discussed on the Ethics Blog. It is that samples and data that individual research groups collect begin to be saved, documented and analyzed in joint biobanks. The material is then made available to other researchers, both nationally and internationally.

This requires an attitude change among researchers who are used to store their data material locally and then use it locally. Now, one sends the material to the biobank instead, which takes care of it and provides service to researchers in the form of analysis, access to more data, advice, and more. Perhaps researchers need not always collect their own material, if relevant data are available via the biobank infrastructure.

This change is discussed in the editorial by Joakim Dillner, Acting director of BBMRI.se, and in an interview with Mark Divers, Head of the biobank facility that BBMRI.se built up at Karolinska Institutet.

The second change has not been discussed on this blog. It is featured in an interview in the newsletter with a researcher in cognitive neurophysiology, Gustav Nilsonne. It is closely related to the first, but requires a change in attitude to what it means to make research available through publication in scientific journals.

The change is about making research open not only through Open Access publication of scientific articles, but also by making raw data available. Such a change is significant in several ways:

  1. Data collected with efforts of many research participants can be used multiple times instead of disappearing in forgotten archives.
  2. Published findings can be critically examined; it becomes more difficult to cheat or be negligent.
  3. It becomes easier to make meta-analysis of data from many studies.

These changes can of course be seen as two sides of the same coin. Researchers seeking services from the biobank facility must accept that other researchers apply for access to “their” data … which thereby become open.

Pär Segerdahl

We recommend readings - the Ethics Blog

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Norm fever

4 February, 2015 / / 0 Comments

 

Pär Segerdahl

How does one become a Platonist; a person who believes in a world of pure ideas? This blog post tries to give an answer.

If I were to use one word to sum up the character of everything that agitates people, it would be: normativity.

As soon as we are engaged by someone’s hairstyle, by a political program, or by how some researchers treated their research participants, we perform some form of normative activity.

Think of all the things we say daily, or hear others say:

  • – It looks better if you comb it like this
  • – What a beautiful coat
  • – Do you still buy and listen to CDs?
  • – That’s not a proper way of treating people
  • – To deny women abortion violates human rights

All these normative attitudes about the tiniest and the greatest matters! Then add to this normative murmuring the more ambitious attempts to speak authoritatively about these engaging issues: attempts by hair stylists, by orators, by politicians, by ethicists, by the Pope, by sect leaders, and by activist organizations to make themselves heard above the murmuring.

A person who was troubled precisely by the latter attempts to speak more authoritatively about the issues that engage people was Socrates. He asked: Are these wise guys truly wise or just cheeky types who learned to speak with an authoritative voice?

Socrates wandered around in Athens, approaching the cockerels and examining their claims to know what is right and proper, genuine and true. These examinations often ended in acknowledgement of lack of knowledge: neither the cockerel nor Socrates himself actually knew.

Socrates’ examinations look like a series of failures. No one knows not what he claims to know. None of us even know what knowledge is!

For Socrates, however, failure is success. He converted another mortal and helped his soul discover a more ideal orientation towards pure normativity: the eternal standards of all that is. No mortal has normative authority, only the norms themselves have. You must search for them, rather than follow orators or sect leaders who just want to make themselves heard. You must orient yourself towards normativity as such, and strive towards perfection.

Socrates was feverishly attracted to this dream of pure normativity. He called his dream “love of wisdom”: philosophy. But for the dream to be more than a feverish dream the dream must be real and reality must be a dream. Another aspect of Socrates’ art of conversation was, therefore, a series of myths, parables and stories, which suggested a more real world beyond this one: a realm of eternal pure norms, the ultimate standards of all things.

One such story is about a slave boy who, although he was illiterate, could be made to “see” a truth in geometry. How was this possible? Of course, because the slave boy’s immortal soul beheld the norms of geometry before he was born among us mortals! Reminiscence of more original normative authority, truer than any mortal’s loud-voiced pretentiousness, made it possible for the slave to “see.”

Something similar occurs, Socrates implied, each time we see, for example, a beautiful building or a brave soldier. Something more primordially real than the house or the soldier – pure norms of beauty, courage, buildings, soldiers – shine through and enable us to see what we naively take for granted as reality. Primordial reality – a realm of pure norms – illuminates all things and enables us to see the beautiful building or the brave soldier (if they resemble their standards).

If normativity sums up the character of everything that engages us, it is perhaps not surprising to find that it easily makes us dream feverishly about a realm of ultimate normative authorities, called “pure ideas.”

Pär Segerdahl

We like challenging questions - the ethics blog

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