Is it ethical that uninformed members of the public decide just how bad your disability is?

March 31, 2015

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

March 25, 2015

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

March 18, 2015

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

March 11, 2015

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

March 3, 2015

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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