Commercialization, but not at any price

February 14, 2017

Pär SegerdahlIn a previous post, I tried to make the point that the pharmaceutical industry can support altruism between research participants and patients, despite the fact that the industry itself is not altruistic but is driven by profit. Medical research will not benefit patients, unless results are developed into commercially available treatments.

However, this presupposes, of course, that pricing is reasonable, so that we can actually afford the drugs. Otherwise, research and research participation become meaningless.

Today, I just want to recommend an article in the journal Cell, where the authors argue that the prices of new cancer drugs have become indefensibly high. They propose new collaborations between academic researchers and small companies, to offer cancer drugs at more reasonable prices. Researchers should ensure that the companies they work together with are willing to sell the drugs with smaller profit margins.

You can find a summary of these ideas in The Guardian.

Pär Segerdahl

Workman, P. Draetta, G. F., Schellens, J. H. M., Bernards, R. (2017). How much longer will we put up with $100,000 cancer drugs? Cell 168: 579-583.

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Not just facts, ideas are also needed

February 8, 2017

Pär SegerdahlWhen fraudulent “academic” journals publish articles without proper peer review. When websites online spread fake information. When politicians talk about alternative facts. Then undeniably, one feels a need for a general tightening up.

A possible problem in this reaction is that we castrate ourselves. That we don’t dare to propose and discuss ideas about the situation we are in. That we don’t dare to think, interpret and analyze. Because we fear being found guilty of error and of contributing to the scandalous inflation of facts and truths.

We hide ourselves in a gray armor of objectivity. In order not to resemble what we react to.

But why do these tendencies occur now? Is it about the internet? Is it about neglected groups of citizens? Is it about economic and political shifts in power?

In order to understand this complex situation and act wisely, we need not just facts but also good questions, thoughts, interpretations and analyses of the situation. If we take that task seriously, we also take relevant facts seriously when we discuss the ideas.

If we react with hypercorrection, with an armor of correctness, we risk repressing our questions about how we should think about our situation. We repress our uncertainty: the motive for thinking, interpreting and analyzing.

Pär Segerdahl

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Distance between media representations and public perceptions of synthetic biology

May 24, 2016

Mirko AncillottiMedia do not generally represent the general public’s views on synthetic biology nor, regrettably, render a balanced or thoughtful picture of the field. Until now media cannot represent a starting point nor can they facilitate a public debate on synthetic biology, which would be desirable for a responsible and responsive development of the field.

In a previous post, written together with Josepine Fernow, I expressed some concerns about the way mainstream media report synthetic biology. Stories told by the journalists are often obviously adhering to the versions of their sources, mainly synthetic biologists. As a consequence, the broad majority of the reports are uncritically positive and optimistic about the field and its potentials.

In a recent article I investigated, together with researchers from The Netherlands, Austria, and Germany, whether this sort of journalistic passivity is specific to Swedish media or if this is a common trend. Well, in case some of you may wonder, the answer is that it is a common trend. Although I cannot claim that it is a global trend, it is a trend in at least 13 European countries and in the US.

But how do different audiences react to what synthetic biology does and can potentially do? Are they also as supportive and progressive as the stories told by the journalists (or, rather, recycled by the journalists)? This is what we tried to understand.

The Meeting of Young Minds is an event which was organized by the Rathenau Instituut in 2011 and 2012, where young synthetic biologists (students) met and debated with spokespersons of Dutch political youth organizations. The analysis of the event showed that positive expectations and an open attitude towards synthetic biology could certainly be found among the prospective politicians. However, concerns about the environment were expressed, as well as about the concept of designing new forms of life.

But of course, political organizations are not neutral and cannot be assumed to mirror general public views.

What happens when we turn our attention to the general public? Participants in citizens’ panels in Austria tended to focus primarily on the challenges and risks presented by synthetic biology and expressed only a mild enthusiasm for its potential applications. Noteworthy is that support for synthetic biology was always conditional to a number of demands, primarily transparency and information, which were defined as essential. Austrian citizens’ experiment of public engagement revealed also a rather worrisome distrust towards scientists and policy makers, coupled with a sense of resignation towards the inevitability of scientific and technological progress. Similar studies in the UK, Austria, and the US showed that public attitudes are either balanced or mainly negative towards synthetic biology.

These differences between media representations and public perceptions indicate a need for more responsible journalism about synthetic biology.

Mirko Ancillotti

(You can read more about Mirko’s work at CRB here.)

Ancillotti M., Rerimassie V., Seitz S. and Steurer W. 2016 “An update of public perceptions of synthetic biology: still undecided?” NanoEthics, DOI: 10.1007/s11569-016-0256-3

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Legal abortion: the right to move on

April 13, 2016

Pär SegerdahlWith brave new ideas you can astonish the world. In the past months the youth association of the Swedish party, the Liberals, made several proposals that astonished not least the mother party – for example, that incest and necrophilia should be allowed. The state should not control individuals’ love life.

Probably, the young politicians are quite proud of their radicalism. They are more liberal than liberalism itself. But what is their radicalism made of?

In March, another radical proposal was made. This time it was about abortion. Women have the right to choose abortion until the 18th week of pregnancy. But men don’t have a corresponding right to opt out of their parenthood. The proposal is about correcting this unfair distribution of the freedom to decide about parenthood.

How? By giving men the right to disclaim paternity until the 18th week of pregnancy: so-called legal abortion. Through the proposal, men get the same right as women to decide if they want to become parents. Thus, justice is restored.

One can surmise that the mother party dreams of making their own little abortion. But listen to how splendid it can sound when one astonishes the world with brave new ideas:

  • “It’s about men also being able to choose whether they want to become parents or not.”
  • “Men should have the same right to opt out of parenthood.”

Indeed, it sounds magnificent: the liberal youth association wants to correct a fundamental asymmetry between the rights of men and women! They are fighting for a more equal society!

I suggest that the “equality” here is purely verbal. It sits on the surface of an individualist language of rights and freedoms, with the words “man,” “woman” and “equal right.” Scratch the surface and the beautiful symmetry disappears.

One thing that is hidden by the jargon, for example, is that the woman’s decision concerns a fetus. But if she doesn’t abort, the man’s abortion decision will be about a child who will be born, and who will live, “legally aborted.”

Another thing that is hidden is that if the woman chooses abortion, neither party becomes a parent, because no child is born. But if she gives birth to the baby, the man will be the father of the child, whether he disclaims legal paternity or not. Law is not everything in life. When a child is born, there is a parenthood that cannot be disclaimed, for the child can say: “My father aborted me.” Only the woman’s abortion decision can completely abolish parenthood.

A third thing that is hidden is that something rings false in the individualist talk about parenthood as my parenthood and your parenthood; as the woman’s parenthood and the man’s. To crown it all, the fetus as well as the child are absent in this reasoning about male and female parenthood – curious! Are they already aborted? Did the young politicians forget something rather central, in their eagerness to develop truly liberal ideas about parenthood?

In order not to be disturbed by all this, in order not hear how false it rings, one must purify an individualist jargon of rights and freedoms, and then lock oneself in it. This is where the youth association’s radicalism lies: in language. It purifies (parts of) the language of liberalism, but as mere linguistic exercises with the words “man,” “woman” and “equal right.”

The radicalism isn’t political, but linguistic. Therefore, one feels instinctively that the discussion that the youth association wants to start up cannot be political, but merely continued exercise of pure concepts – like when schoolchildren plod through grammatical examples to one day be able to speak a language that still is foreign to them.

Ludwig Wittgenstein described such pure conceptual exercises as language that idles, like an engine can idle without doing its work. In this case, it is the language of liberalism that is idling.

I propose a good dose of Wittgenstein.

Pär Segerdahl

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Macchiarini and the spirit of fraudulence

February 10, 2016

Pär SegerdahlI assume you heard of Paolo Macchiarini, the “star surgeon” who, with the willpower of a general, simply would win a great battle at the frontline of research – by creating new tracheae using the patients’ own stem cells. That the endeavor had costs in terms of a few soldiers’ or patients’ lives is sad, but some losses must be accepted if one is to win a major battle in the service of cutting-edge experimental research.

It is difficult to avoid such an interpretation of Macchiarini’s mindset, after seeing the Swedish TV-documentaries about him (“Experimenten”/”The Experiments”). You feel the presence of a dominating iron will to carry out a plan and to win. It feeds a warlike spirit in which collegial doubts must be suppressed because they corrupt the morale and slow down the march forward, toward the frontline.

Truth is, as we know, the first casualty of war. Losses must be described as successes, in order not to lose readiness for action in the final battle – which, of course, will be won, don’t for a moment doubt that! The condition of patients who after surgery barely can breathe must thus be described as if the surgery had given them a nearly normal respiratory function. Macchiarini’s misconduct follows the logic of war.

Imagine this rigid winner, waiting impatiently for patients for whom his unproven methods (with some good will) could be interpreted as a last chance to survive. Does he approach the patients as a doctor who wants to offer a last treatment option? Hardly, but the possibility of interpreting the situation in such a way takes him to the frontline: he gets the opportunity to operate on them.

Does he then relate to the patients as a researcher to his participants? Not that either. For the treatment is only improvised in the heat of battle and can hardly even be called experimental; and all failures will be covered up by more scientific fraudulence.

The fact that research ethics developed in the shadow of the Second World War is hardly a coincidence. Something that worries in the Macchiarini case is that research itself – with its competition for funding and more – obviously can be animated by a warlike and strategic spirit of winning, which corrupts individuals as well as institutions…

It goes without saying that suspected research misconduct should not be investigated by the universities themselves; that there is a need for an independent body that handles such matters.

Pär Segerdahl

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Trust, responsibility and the Volkswagen scandal

December 15, 2015

Jessica Nihlén FahlquistVolkswagen’s cheating with carbon emissions attracted a lot of attention this autumn. It has been suggested that the cheating will lead to a decrease in trust for the company, but also for the industry at large. That is probably true. But, we need to reflect on the value of trust, what it is and why it is needed. Is trust a means or a result?

It would seem that trust has a strong instrumental value since it is usually discussed in business-related contexts. Volkswagen allegedly needs people’s trust to avoid losing money. If customers abandon the brand due to distrust, fewer cars will be sold.

This discussion potentially hides the real issue. Trust is not merely a means to create or maintain a brand name, or to make sure that money keeps coming in. Trust is the result of ethically responsible behaviour. The only companies that deserve our trust are the ones that behave responsibly. Trust, in this sense, is closely related to responsibility.

What is responsibility then? One important distinction to make is the one between backward-looking and forward-looking responsibility. We are now looking for the one who caused the problem, who is to blame and therefore responsible for what happened. But responsibility is not only about blame. It is also a matter of looking ahead, preventing wrongful actions in the future and doing one’s utmost to make sure the organisation, of which one is a member, behaves responsibly.

One problem in our time is that so many activities take place in such large contexts. Organisations are global and complex and it is hard to pinpoint who is responsible for what. All the individuals involved only do a small part, like cogs in a wheel. When a gigantic actor like Volkswagen causes damage to health or the environment, it is almost impossible to know who caused what and who should have acted otherwise. In order to avoid this, we need individuals who take responsibility and feel responsible. We should not conceive of people as powerless cogs in a wheel. The only companies who deserve our trust are the ones in which individuals at all levels take responsibility.

What is most important now is not that the company regains trust. Instead, we should demand that the individuals at Volkswagen raise their ethical awareness and start acting responsibly towards people, society and the environment. If they do that, trust will eventually be a result of their responsible behaviour.

Jessica Nihlén Fahlquist

(This text was originally published in Swedish, in the magazine, Unionen, industri och teknik, December 2015.)

Further reading:

Nihlén Fahlquist, J. 2015. “Responsibility as a virtue and the problem of many hands,” In: Ibo van de Poel, Lambèr Royakkers, Sjoerd Zwart. Moral Responsibility in Innovation Networks. Routledge.

Nihlén Fahlquist J. 2006. “Responsibility ascriptions and Vision Zero,” Accident Analysis and Prevention 38, pp. 1113-1118.

Van de Poel, I. and Nihlén Fahlquist J. 2012. “Risk and responsibility.” In: Sabine Roeser, Rafaela Hillerbrand, Martin Peterson, Per Sandin Handbook of Risk Theory, 2012, Springer, Dordrecht.

Nihlén Fahlquist J. 2009. “Moral responsibility for environmental problems – individual or institutional?” Journal of Agricultural and Environmental Ethics 22(2), pp. 109-124.

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The Ebola epidemic also created an epidemic of rumors

November 18, 2015

Pär SegerdahlThe outbreak of Ebola virus disease in West Africa in 2014 was fought with scientific, medical knowledge about the virus. But for that knowledge to be translated into practice, good communication with the people in the affected areas was needed.

Joachim Allgaier and Anna Lydia Svalastog describe how communication was hampered by the fact that the epidemic also created an epidemic of rumors about the disease, which internet and mobile communication quickly spread in the affected areas and other parts of the world. The Ebola epidemic was at least two epidemics:

Unscientific ideas about the causes of the disease or about remedies (like eating raw onions, drinking salt water) spread online. But also conspiracy theories about the international efforts spread, which sometimes led to locals hiding their sick or preventing the work of humanitarian organizations.

The article also includes examples of successful treatments of the communicational epidemic. Local anthropologists found, for example, that the name “isolation centers” was interpreted by the locals as “death chambers,” and suggested that one should instead speak of “treatment centers.” Anthropologists could also, by contacting respected members of local communities, help changing burial rituals and other customs that contributed to the spread of the Ebola virus.

The article furthermore gives examples of how online social networks and YouTube, which contributed to the spread of rumors, also were used by the local populations to inform each other about how to wash  hands and behave to actually reduce the spread of the disease.

The conclusion of the article is that even if scientific and medical tools are absolutely central to combating virus epidemics, we must in order to succeed also treat the secondary, virtual epidemics that quickly spread through click-friendly news links and social networks online. All this requires sensitivity to local contexts.

Both kinds of epidemics must be treated simultaneously.

Pär Segerdahl

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