The Ethics Blog

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

Category: In the media (Page 4 of 7)

The Ebola epidemic also created an epidemic of rumors

18 November, 2015 / / 0 Comments

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

This post in Swedish

We care about communication - the Ethics Blog

Share this post

Scientists shape how the media portray synthetic biology (by Mirko Ancillotti)

27 October, 2015 /

mirko-ancillotti2 Most of us learn about scientific developments through the media. Journalists and newspaper editors not only select what to bring to public attention but also the way the contents are conveyed. But how can we be sure that what they report is well researched?

There are some new studies on how media portray synthetic biology in different countries. It turns out that reports are both unbalanced and uncritical. Most of the stories use the same terminology, figures of speech and envision the same fields of application. This is because they rely on the same sources: press releases, press conferences or interviews with a few prolific American scientists, with Craig Venter doing the lion’s share. Stories are often optimistic and future oriented. The promising applications of synthetic biology are connected to subjects that people already prioritize like health and environment. But it also means that the possible risks are omitted or presented in a few choice words close to the end.

josepine-fernow2Scientists have a public role and a duty to perform science outreach and science communication in a responsible way. This duty is amplified by the interaction with mass media. Indeed, there are a number of national and international regulations and guidelines that provide indications on what kind of relationship and communication scientists should entertain with the media and what pitfalls they should avoid. Is it a problem that the media copy their framing and present the field with their words? If scientists can reach the public directly, does that mean that we should increase our demand on their communication? Maybe not. Managing to popularize and frame science in a way that attracts media’s attention and an inattentive and unengaged public is already a communications feat.

Journalists have ethical responsibilities and a strong professional ethics. This resounds in a remarkable amount of national and international guidelines and regulations. Did the journalists do a good job when they kept the message and vision the scientists provided and spread that to the public? Should we ask journalists to be more critical and filter the voice of the scientists involved?

Well, we would of course prefer to receive balanced information filtered by knowledgeable science journalists. But science news is not always handled by them. Perhaps the real problem is the logic of the current media landscape. There is no time to research a press-release: the news have to go out, otherwise someone will beat you to it.  In the extreme, this logic allows for hoax press releases to become news (like the one that made the Emulex stock plummet in 2000). If we want journalists to do a good job, we have to give them time. Because the idea that media basically “retweet” what a few scientists and entrepreneurs decide is of course a bit disturbing.

If you are interested to read more about this topic have a look at Mirko Ancillotti’s recent publications:Uncritical and unbalanced coverage of synthetic biology in the Nordic press that was just published in Public Understanding of Science, or Synthetic Biology in the Press: Media Portrayal in Sweden and Italy.

Mirko Ancillotti and Josepine Fernow

We care about communication - the Ethics Blog

Share this post

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

Share this post

Stress turns ordinary cells into pluripotent stem cells

19 February, 2014 / / 0 Comments

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTissues of the body originally form when “naïve” undifferentiated embryonic stem cells differentiate to form the “mature” cells of specific tissues: liver cells, brain cells, skin cells, and so on.

The mature cells are then locked in their differentiated forms, as if they met their fate.

I recently mentioned that Yamanaka and Gurdon were awarded the Nobel Prize in Medicine in 2012 for their surprising findings about dedifferentiation. Through direct genetic modification of nuclear function, mature cells can be reprogrammed to return to naïve stem-cell states. These dedifferentiated cells are pluripotent and can differentiate again and form a variety of mature cell types.

The rejuvenated cells regain the naïve properties of embryonic stem cells!

In January this year, an article published in Nature reported that the genetic reprogramming can be achieved more easily, without direct nuclear manipulation.

All you need to do to dedifferentiate mature cells, according to this article, is to subject them to stress: like an acid environment. Not all but some of the mature cells will be freed from their fate as liver or skin cells and return to naïve pluripotent states.

An easy to read summary can be found in BioEdge, and here is a link to the article:

Using mature cells to create stem cells with properties of embryonic stem cells might thus be easier than expected. In fact, the new findings weren’t even made in a stem-cell laboratory.

The ethical responses to the findings are not as thrilling as the findings. Some welcome the possibility of creating “ethical stem cells” that avoid the controversy about embryonic stem cells. Others see “new ethical issues” on the horizon.

These responses are characteristic of a routine view of ethical assessment as a static one-way process: ethicists assess others. But these findings indicate that processes in the opposite direction are possible as well, since they seem to challenge ethical assumptions about the unique function of the embryo.

I’m tempted to extend Thomas Kuhn’s notion of scientific revolutions to ethics. The new findings could function as anomalies for ethically paradigmatic ways of thinking about the embryo.

As stress turns mature cells into naïve pluripotent stem cells, these findings could stress some ethicists to return to more open-minded states that in the future can differentiate in new and unexpected directions.

Pär Segerdahl

We like challenging findings - The ethics blog

Share this post

Human and inhuman

8 January, 2014 / / 0 Comments

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogThe words “human” and “inhuman” are often used as moral judgments. For example: reasoning is (brilliantly) human; violence is (terribly) inhuman.

Such forms of speech are perfectly in order. Yet, we easily go astray if we use the same forms of speech in attempts to diagnose war and conflict, or the path to peace. (Which is extremely tempting, especially for sensible people.)

The human is purified as rational being. Violence and conflict are understood as results of inhuman interference with human reason. Can such idealized analysis illuminate real problems?

What occasions these thoughts is a review in the Guardian, which in terms of blogging was published ages ago. Stuff worth thinking about was written already in 2006. The British philosopher John N. Gray then reviewed Amartya Sen’s book, Identity and Violence: The Illusion of Destiny.

Sen explains violence between groups as caused by inhuman interference with what is properly human. A proper human makes rational choices in a plurality of group belongings. But ill-disposed propagandists make gullible people think that their human identity already is fixed through a singular group belonging. This short-circuits reason and causes them to blast car bombs and commit genocide against people with other narrowly defined identities.

Without denying the reality of identity-driven violence or the danger of propaganda, Gray questions the innocent intellectualism of Sen’s diagnosis. Sen makes it sound as if people resort to violence because a false theory of human nature was drummed into them. He presents violence as if it were caused by inhuman factors disturbing human nature.

But people hardly lynch each other because of “erroneous beliefs.” And the fear, despair and cruelty of their actions are only too deep-rooted human traits, Gray observes grimly.

It is difficult to think clearly about the human. Perhaps even Gray, in spite of his clear-sightedness, occasionally starts out from a moral delimitation of the human: a more disillusioned one that prefers blaming rather than exalting the human.

(Gray’s own new book, The Silence of Animals, was reviewed last summer by Thomas Nagel.)

Pär Segerdahl

Minding our language - the Ethics Blog

Share this post

Direct-to-consumer genetic testing: empowering people to hurt themselves?

4 December, 2013 / / 0 Comments

There are two tempting pictures of the human. One is that we (ideally) are autonomous individuals who make rational choices on the basis of information. The other picture is that our individuality is coded in our DNA.

These pictures work in tandem in the marketing of direct-to-consumer genetic testing. The website of the personal genomics company, 23andMe, features their DNA “spit kit.” On the half-open lid you can read: Welcome to you.

That’s the DNA picture: Your DNA contains the information about you. For 99 dollars and a saliva sample you’ll get to know who you are.

If you click Order now, you encounter the other picture: Knowledge is power. By buying this product, you’ll be empowered to better manage your health and wellness. You’ll get information about diseases you risk developing and diseases you are less likely developing, and can plan your life accordingly.

That’s the autonomy picture: You are the driver of your life. For 99 dollars and a saliva sample, you are empowered as rational decision-maker about your health.

The combination of the two pictures is a powerful marketing campaign that can be followed on YouTube.

The US Food and Drug Administration (FDA) recently sent a warning letter to 23andMe, urging them to immediately stop marketing the test. The device isn’t just any commercial product, but is to be seen as medical technology. This implies certain quality standards:

  • “…we still do not have any assurance that the firm has analytically or clinically validated the PGS for its intended uses…”

FDA also expresses concern about public health consequences if the test doesn’t work reliably. A false positive risk assessment for breast or ovarian cancer “could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.”

Another concern is that patients who receive assessments of their personal drug responses may begin to self-manage their doses or abandon their therapies.

Genetic tests will no doubt play significant roles in the future. But genetic risk information is tremendously complex and its predictive value difficult to assess. The danger is that the deceptively simple marketing rhetoric of empowering individuals to take charge of their lives currently rather might empower people to hurt themselves.

The Swedish Foundation for Humanities and Social Sciences decided this autumn to support a joint European research program on genetic risk information. The program is led by Mats G. Hansson at CRB. Click the link below for a summary of the program:

FDA’s warning letter to 23andMe underlines the timeliness of the new program. More on this in the future!

Pär Segerdahl

Following the news - the ethics blog

Share this post

Save humanity from the human

22 August, 2013 / / 0 Comments

We must enhance the human; or else humanity will come to an end. Thus dramatically one could summarize the bioethicist Julian Savulescu’s TEDx-talk in Barcelona in July.

The talk lasts fifteen minutes; you can watch and listen to it yourself: The Need for Moral Enhancement.

The idea is that we urgently need medicine and technology to enhance our moral skills; otherwise we will not be able to handle the global threats that we ourselves created: climate change, nuclear weapons, terrorism, starvation, escalating violence.

Globalization, in short, created a world with dimensions to which our hunter-gatherer morality isn’t adapted. Only a moral pill can save us now.

Listening to the talk, I’m struck by how archaic it sounds, despite references to modern medicine and technology. Thus fire-and-brimstone preachers always made people feel the proximity of the end of the world. Thus fire-and-brimstone preachers always made people feel that the cause of the despicable state of the world is their own moral failure. Thus preachers always forced a new awakening:

  • “You’re on the wrong path; I can show you the way!”

The difference is the use of what could be termed the modern rhetoric of empirical justification, in which all claims must be supported by evidence… that is to say, by PowerPoint slides. The rhetoric seems to direct the use of evidence, however, for evidence pointing in undesired directions isn’t cited.

Neither does Savulescu explore alternative ways of thinking. Has globalization really produced a world so big that we cannot handle it? Couldn’t one just as well claim that globalization created a world so miserably tiny and manageable that one might grieve for the death of all that is great?

In the talk, the most archaic form of moralizing is provided with a modernized rhetorical façade, in order to persuade us that only conversion to a biomedically perfected morality can save us now. It is slightly paradoxical.

No wonder the audience looks dejected.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Share this post

The specific study misconception of biobank infrastructure

5 August, 2013 / / 0 Comments

It is comprehensible that a patient who agrees to participate in a clinical trial expects to get access to a new effective therapy that will restore health. It is comprehensible that it is difficult to convey objective, dispassionate information that such an expectation is unrealistic, given randomization and other features of clinical trials.

Participation in biobank research ought to be simpler to understand. How can you expect to get healthy by giving a blood sample and allowing future research to combine the genetic data that can be obtained from the sample with data accumulating over time in health registries? The therapeutic misconception ought to be less tempting in biobank research, making the relationship between researchers and participants more straightforward.

For this reason, I was surprised to read on the Science Codex Blog about a study indicating difficulties to understand participation in biobank research; difficulties similar to those that more comprehensibly arise for participation in clinical trials.

What surprised me even more, however, was the discussion about this finding that was quoted on the blog. The fact that participants in biobank studies cannot expect a new and better therapy was presented as a shortcoming vis-à-vis clinical trials, as if such an expectation was not a misconception. Moreover, hopes were expressed that a change is underway:

  • “Some new models for biobank studies are more inclusive of the research subject, offering on-going contact and return of results that may impact their health, says Dr. McBride.”

I do not exclude that such models might work for some restricted biobank studies about specific diseases, which might require on-going contact with a particular patient group to get the research done.

But biobanking is more and more about building infrastructures where samples are stored indefinitely for future research that cannot be specified in advance. Making participation in such infrastructures more like participation in specific clinical trials – supporting the therapeutic misconception where it ought to be most distant! – appears fundamentally misguided.

The infrastructural nature of modern biobanking remains to be understood. It needs to be freed from what might be termed the specific study misconception.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Share this post

An ape genius, or just an ordinary talking ape?

12 June, 2013 / / 0 Comments

In 2001 I travelled to Atlanta, where Sue Savage-Rumbaugh then worked with the language-competent bonobos Kanzi and Panbanisha. A question I travelled with concerned the linguistic tests that I had seen in a TV-documentary, Kanzi, an ape of genius.

In these tests, the ape responds to requests in spoken English, uttered by an experimenter who – to avoid cueing Kanzi through extra-linguistic assists like gestures and gazes – stands behind his back, or sits in an adjacent room speaking through a microphone, or covers her face with a welder’s mask. The aim of this experimental design is to distill Kanzi’s comprehension of vocabulary and syntax, the essence of language.

What I wondered was this: how did the experimenters get the ape into the test situation?

In the documentary, Kanzi appears miraculously as if he were nothing but a brilliant subject of scientific experimentation, an ape genius. Sitting on a chair wearing headphones, he picks up photos of grapes, keys, potatoes, people… He responds perfectly reliably, hearing the verbal requests, “Kanzi, give Sue the picture of grapes,” and so on.

How did Kanzi become that brilliant research subject? What happened before the camera was turned on? Does Kanzi spend his days on a chair wearing headphones, just waiting for an experimenter? Probably not, but then what is the relation between his ordinary life and the test situation? Is it irrelevant, since the conditioning anyhow took place in the same kind of scientific situation?

My first question to William M. Fields, who invited me to Atlanta, was: How do you get Kanzi into the experiment? The simplicity of his answer stunned me:

  • “We ask Kanzi if he wants to work.”

In contrast to his half-sister, Panbanisha, who typically refused to play the research subject role, Kanzi usually is willing to work. Then follows negotiations about the food he will have access to during work and which activities and meetings he’ll be granted later because he admits to work.

The filmed tests have a context, but the context isn’t more science. It is Kanzi’s life with other bonobos and with the speaking humans who co-reared young bonobos together with their bonobo mothers. Kanzi is an adult, but a point can be made by comparing him with children who participate in controlled psychological experiments. These children are not raised in a lab. They have a home. Only occasionally are they taken into the lab to participate in science. This often requires quite a bit of negotiation and instruction.

Child participation in psychological experimentation exhibits home/lab duality. The child’s language develops at home and is only tested in the lab. The science that charts the child’s linguistic development doesn’t reflect the more significant context outside of the lab, where the child becomes the speaking being that is being tested.

The child’s life at home is primal. Science plays the second fiddle and doesn’t recreate the vitality that made what is scientifically tested possible.

Animal science rarely exhibits home/lab duality. The animals are conditioned in the same type of controlled situations as those in which they are tested. If an animal picks up laminated photos of keys, it is because it was trained to pick up laminated photos of keys. It doesn’t have a life with doors, cabinets and keys, independently of its scientific disciplining. But Kanzi does.

Like a child whose parents decided to contribute to psychological science, Kanzi is not disciplined as a pure research subject. He became a speaking being at home, in ordinary ape-human ways of life (in an ape-human culture). Only occasionally is he talked and instructed into the lab, to participate in activities that don’t reflect the vibrant home situations in which he became who he is.

Kanzi is no aberrant ape genius. He is just an ordinary talking ape. Home/lab duality enabled him to become one.

(Want to read more? Here are some books.)

Pär Segerdahl

Understanding enculturated apes - the ethics blog

Share this post

What does it mean to simulate the human brain?

30 January, 2013 / / 0 Comments

Earlier this week the exciting news was released that the Human Brain Project is one of the two Flagship Initiatives launched by the European Commission.

The project is an international collaboration between more than 80 research institutions. It will create computer models of the human brain to help us better understand the brain and its diseases. It is hoped that the project also will have practical applicability in the form of new computing and robotic technologies.

At CRB we are especially happy and proud that Kathinka Evers is on board as one of the Division Leaders of the Ethics and Society Division. She will investigate the philosophical implications of the project for our understanding of mind, identity and consciousness.

A main question for Kathinka is what simulating a brain means. The brain evolved in an environment and works embedded in social contexts. What does this imply for the attempt to simulate the brain? How does embodiment and social context enter the simulation of the brain?

The mapping of the human genome led to a deeper understanding of the significant role the environment plays in the functioning of our genes. Will the Human Brain Project result in similar emphasis on the environment with which the brain interacts?

The Ethics Blog will follow Kathinka’s work on this and other questions about the human brain with great interest.

(Here is an interview I made with Kathinka in June 2012.)

Pär Segerdahl

Part of international collaborations - the Ethics Blog

Share this post
« Older posts Newer posts »