The Ethics Blog

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

Author: Pär Segerdahl (Page 28 of 43)

All you need is law? The ethics of legal scholarship (By Moa Kindström Dahlin)

9 June, 2015 / / 0 Comments

Moa Kindström DahlinWorking as a lawyer in a multidisciplinary centre for research ethics and bioethics, as I do, often brings up to date questions regarding the relationship between law and ethics. What kind of ethical competence does academic lawyers need, and what kind of ethical challenges do we face? I will try to address some aspects of these challenges.

First, I must confess. I am a believer, a believer of law.

That does not mean that I automatically like all regulations, it is just that I cannot see a better way to run the world, but through a common system of legal norms. Believing in law means that I accept living in a different universe. I know the non-lawyers cannot always see my universe, but I see it clearly, and I believe in it. You’ll have to trust me – and all other lawyers – through training and education, we see this parallel universe and believe in it.

I do not always like what I see, but I do accept that it exists.

I think that understanding a lawyer’s understanding of what law is, is a necessary precondition for going deeper into the understanding of what I here refer to as the ethics of legal scholarship. So, what is law? This question has a thousand answers, stemming from different philosophical theories, but I choose to put it like this:

Law is an idea as well as a practical reality and a practice.

As a reality, law is the sum of all regulation, locally (e.g. Sweden), regionally (e.g. Europe) and internationally. For example, the statutes, the preparatory works, court decisions, the academic legal literature, the general legal principles and other legal sources where we find the answers to questions such as “Is it legal to do this or that?” or “Might I be responsible for this specific act in some way?”

The practice of law has to do with the application of general legal knowledge (whatever that means) to a specific case, and this application always involves interpretation. This means that law is contextual. The result of its application differs depending on situation, time and place.

Law as an idea is the illusion that there are legal answers out there somewhere, ready to be discovered, described and applied. Lawyers live in a universe where this illusion is accepted, although every lawyer knows that this is oversimplified. There is rarely an obvious answer to a posed question, and there are often several different interpretations that can be made.

The legal universe is a universe of planets and orbits: different legal sources and jurisdictions, different legal traditions and ideas on how to interpret legal sources. There are numerous legal theories, perspectives and ideologies: legal positivism, critical legal studies, law and economics and therapeutic jurisprudence to name a few. The way we, the lawyers, choose to look at the law – the lens of our telescope if you like – affects how we perceive and decipher what we see.

Law is sometimes described as codified ethics. The legal system of a state often provides structures and systems for new technologies and medical progress. Therefore, law plays an important role when analyzing a state’s political system or the organization of its welfare system.

Law, in short, is a significant piece of a puzzle in the world as we know it.

This means that the idea of law as something concrete, something we can discover and describe, creates our perception of reality. Yet, we must be aware of the fact that the law itself is intangible, and answers to legal questions might differ, depending on whom (which lawyer) is making the analysis and which lens is being used.

Sometimes the answer is clear and precise, but many times the answer is vague and blurry. When the law seems unclear, it is up to us, the lawyers, to heal it.

We cannot accept “legal gaps”.

The very idea that law is a system that provides all the answers means that we must try to find all the answers within the system. If we cannot find them, we have to create them. Therefore, proposing and creating legal answers is one of the tasks for legal scholars. With this task comes great power. If a lawyer states that something is a description of what law is, such a description may be used as an argument for a political development in that direction.

Therefore the descriptions of what law is and what is legal within a field – especially if the regulation in the field is new or under revision – must always be nuanced and clearly motivated. If the statement as to what law is emanates from certain starting points, this should be clarified in order to make the reasoning transparent.

This is what I would like to call the ethics of legal scholarship.

It is worth repeating: Research within legal scholarship always requires thoughtfulness. We, the scholars, have to be careful and ethically aware all the time. Our answers and statements as to legal answers are always normative, never just descriptive. Every time an academic lawyer answers a question, the answer or statement might itself become a legal source and be referred to as a part of the law.

Law is constantly reconstructing itself and is, to some extent, self-sufficient. But if law is law, does that mean that all you need is law?

Moa Kindström Dahlin

Thinking about law - the Ethics Blog

 

Second issue of our newsletter about biobanks

2 June, 2015 / / 0 Comments

Pär SegerdahlNow you can read the second newsletter this year from CRB and BBMRI.se:

The newsletter contains four news items:

1. Anna-Sara Lind presents a new book, Information and Law in Transition, and the contributions to the book by CRB researchers.

2. Anna-Sara Lind describes the situation for the temporary Swedish law on research registries.

3. Mats G. Hansson reports on a modified version of broad consent for future research.

4. Josepine Fernow presents a new article by Jennifer Viberg on the proposal to give research participants freedom of choice about incidental findings.

(Link to PDF version of the newsletter)

Pär Segerdahl

We recommend readings - the Ethics Blog

The Swedish Data Protection Authority rejects extension of temporary law on registry research

28 April, 2015 / / 0 Comments

Pär SegerdahlSince the new Swedish law on research databases is delayed, there is a proposal to extend the current temporary law on certain registries for research about what heredity and environment mean for human health (until December 31, 2017).

The Swedish Data Protection Authority rejects extension, because major deficiencies noted previously have not been addressed and since the requirements for purpose identifications are not sufficiently specific and explicit.

Regarding specific and explicit purposes, the Authority gives special weight to a statement by the European so-called Article 29 Working Party, cited in the opinion:

  • “The purpose of the collection must be clearly and specifically identified: it must be detailed enough to determine what kind of processing is and is not included within the specific purpose, and to allow that compliance with the law can be assessed and data protection safeguards be applied. For these reasons a purpose that is vague and general, such as for instance ‘improving user’s experience’, ‘marketing purposes’, ‘IT-security purposes’ or ‘future research’ will – without more detail – usually not meet the criteria of being ‘specific’.”

This I regard as problematic in two ways.

First: In the cited statement the Article 29 Working Party equates the purpose “future research” with purposes like “improving the user experience” and “marketing purposes”. It is unclear if one can equate research purposes with such purposes, since researchers do not intend to return to the persons whose data are collected, to give them specifically profiled consequences. Personal data circulate in a categorically different way in research.

Secondly: The website of the Article 29 Working Party begins with a disclaimer. The group emphasizes that all material on the website solely reflects the group’s views, not the position of the European Commission. The group only has an advisory status and acts independently.

The group’s reasoning about research purposes can be questioned, and it seems to relinquish at least some of the authority that the Data Protection Authority ascribes to it in its opinion.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Teaching the child the concept of what it learns

21 April, 2015 / / 0 Comments

Pär SegerdahlIt is natural to think that a child, who learns to speak, learns precisely that: simply to speak. And a child who learns addition learns precisely that: simply to add.

But is speaking “simply speaking” and is adding “simply adding”?

Imagine a very young child who is beginning to say what its parents recognize as the word “mummy.” The parents probably respond, enthusiastically:

  • “Oh, you said mummy!”

By repeating “mummy,” the parents naturally assume they support the child to say mummy again. Their focus is entirely on “mummy”: on the child’s saying of “mummy” and on their repetitions of “mummy.” By encouraging the child to say “mummy” again (and more clearly), they are teaching the child to speak.

No doubt their encouraging repetitions do support the child. However, the parents didn’t merely repeat “mummy.” They also said:

  • “Oh, you said mummy!”

From the very first words a child utters, parents respond not only by repeating what the child says, but also by speaking about speaking:

  • “Say daddy!”
  • “Do you want to speak to mummy?”
  • “You said you wanted cookies”
  • “Which cookie did you mean?”
  • “What’s your name?”
  • “What you said isn’t true”
  • “Don’t use that word!”

Parents’ natural attitude is that they teach the child simply to speak. But, more spontaneously, without intending or noticing it, they initiate the child into the notions of speaking. One might call this neglected dimension of teaching: the reflexive dimension. When we teach the child X, we simultaneously initiate it into the reflexive notions of X: into the concept of what it learns.

This should apply also to learning addition, and I assume to just about anything we learn. There is an easily neglected initiation into a reflexive dimension of what is learned.

I suppose one reason why the reflexive dimension is neglected is that it is what enables talk about what the child learns. Reflexivity draws our attention away from itself, and thus from the fact that the child not simply learns what learns, but also the concept of what it learns.

If you want to read more about reflexive practices – how they are acquired, how they practically contribute to making language what it is (said to be); how they tend to be intellectually sublimated as theories of language – I want to recommend the writings of Talbot J. Taylor.

One article by Taylor that especially clearly demonstrates the early onset of reflexive language use in children  is:

Taylor’s work on reflexivity challenges me to reconsider the nature of philosophy. For philosophy seems to be concerned with the kind of notions we fail to notice we initiate children into, when we say, “You said mummy!”

Philosophy is “about” what we don’t notice we learn as children.

Pär Segerdahl

Minding our language - the Ethics Blog

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

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

We like challenging questions - the ethics blog

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

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

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

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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