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

Category: In the research debate (Page 26 of 37)

Online course in research ethics, spring 2016

Pär SegerdahlAnyone who manages research also needs to be able to reflect on research. Not only the researchers themselves, but also funding bodies, journal editors, members of research ethics committees, administrators, journalists, organizations, politicians, and others.

How do you act if you suspect research misconduct, and what is it? What are the ethical and legal regulations governing data management or research on humans and animals?

If you want to learn more about these issues, or perhaps about publication ethics and authorship rules, conflicts of interest, mentor/trainee responsibilities, biosecurity and more – then we can help you. We give an online course in research ethics for medicine and the life sciences.

The course runs for ten weeks, from April 4 to June 10, every week with its own theme (the last week is devoted to sharing what you learned with your home institution). The course includes video lectures and texts to read, but also interactive exercises and regular e-meetings with other students and with the teacher.

The course is given in English and is open to students from all over the world. If you want to know what some of the former students have to say about the course, you can read more here. And if you want to know who the course is aimed at, read more here.

Research ethical responsibility is vital and it is important that ethics education reaches out. The course fee is € 1.125 (including tax), and to students who cannot receive financial support from their home institution we offer a limited number of scholarships for which application deadline is February 15.

If you don’t need a scholarship you can apply for the course until course start.

Pär Segerdahl

This post in Swedish

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Fourth issue of our newsletter about biobanks

Now you can read the fourth newsletter this year from CRB and BBMRI.se about ethical and legal issues in biobanking:

The newsletter contains three news items:

  1. Moa Kindström Dahlin describes the work on ethical and legal issues in the European platform for biobanking, BBMRI-ERIC, and reflects on what law is.
  2. Josepine Fernow features two PhD projects on research participants’ and patients’ preferences and perceptions of risk information.
  3. Anna-Sara Lind discusses the ruling of the European Court of Justice against the Safe Harbour agreement with the United States.

(Link to PDF version of the newsletter)

And finally, a link to the December issue of the newsletter from BBMRI.se:

Merry Christmas and a Happy New Year!

Pär Segerdahl

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The Ebola epidemic also created an epidemic of rumors

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

Open data access is regulated access

Pär SegerdahlWe usually associate open access with the publication of scientific articles that anyone with internet access can read, without price barrier.

The concept “open access” is now being used also for research data. I have written about this trend towards open data earlier on the Ethics Blog: Openness as a norm.

In many cases, research data are made as freely available as the open access articles that anyone can read; often in connection with the publication of results based on the data. This occurs, for example, in physics.

There is a strong trend towards open data also in medical research; but here the analogy with articles that anyone can read is no longer valid. Biobank and register-based research work with sensitive personal data, to which a number of laws regulating data access apply.

Yet one could speak of a trend towards open data also in this domain. But it then means something different. It’s about making data as accessible as possible for research, within the regulations that apply to this type of data.

Since the relevant laws and ethical frameworks are not only opaque but also differ between countries, the work is largely about developing common models for researchers to work within. One such attempt is made in an article by, among others, Deborah Mascalzoni and Mats G. Hansson at CRB:

The article formulates 15 principles for sharing of biological samples and personal data between researchers. It also includes a template of the written agreements that scientists can make when one research group transfers data or materials to another research group.

Take a look at these principles, and the template of the agreements, and you’ll soon get an idea of how many strict conditions that must be met when biological samples and personal data are shared for research purposes.

Given how open access often is associated with the possibility for anyone at any time to read articles without price barrier, one should perhaps avoid using the term in this context. It may mislead, since this form of data access is heavily regulated, although the aim is to support researchers to share their data and samples.

Pär Segerdahl

This post in Swedish

Minding our language - the Ethics Blog

Culturally sensitive ethics

Pär SegerdahlHealth care receives patients from many different cultures and health care professionals are encouraged to be sensitive to patients’ cultural background. But what is a culture? What is it one should be sensitive to?

Last week, CRB organized a workshop on Islamic perspectives on reproductive ethics. A case that was discussed was this: an unmarried Muslim couple (21 years old) seeks advice on contraception. Should health care workers provide counseling, when premarital sex is forbidden in Islam?

The case brought the question of cultural sensitivity into immediate focus for me. To what should one be sensitive: to doctrines, or to human lives? What “is” a culture: the formulated ideas or the way people live (with their ideas)?

The Muslim couple actually sought counseling. Being culturally sensitive can also mean being sensitive to this fact: that this is how people can live (with their ideas).

It is tempting to objectify cultures in terms of doctrines, especially when they are foreign to us. We don’t know the people and their daily lives, so we try to understand them through the texts – as if we read their “source code.” But the texts are living parts of the culture. They have uses, and these practices cannot be inferred from the texts.

Aje Carlbom (social anthropologist at Malmö University) stressed that this temptation to objectify other cultures can arise even in a culture; for example, when people who belong to it move to parts of the world where people live differently. Suddenly they don’t fully understand their own culture, for it lacks its real-life support, its everyday context, and therefore one turns to the texts. One’s own culture is objectified.

I wonder: Are not these tendencies extremely common; are they not in all of us? Are they not in ethics? Isn’t there a will to objectify ethics, to formulate the “ethical source code” that should govern, for example, our biomedical practices?

I think we need culturally sensitive ethics: in the sense of an ethics that responds sensitively to what is actually happening, and that contributes to meaningful contexts. An ethics that does not objectify either cultures or Ethics (capitalized).

Pär Segerdahl

This post in Swedish

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

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

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The challenge to simulate the brain

Michele FariscoIs it possible to create a computer simulation of the human brain? Perhaps, perhaps not. But right now, a group of scientists is trying. But it is not only finding enough computer power that makes it difficult: there are some very real philosophical challenges too.

Computer simulation of the brain is one of the most ambitious goals of the European Human Brain Project. As a philosopher, I am part of a group that looks at the philosophical and ethical issues, such as: What is the impact of neuroscience on social practice, particularly on clinical practice? What are the conceptual underpinnings of neuroscientific investigation and its impact on traditional ideas, like the human subject, free will, and moral agency? If you follow the Ethics Blog, you might have heard of our work before (“Conversations with seemingly unconscious patients”; “Where is consciousness?”).

One of the questions we ask ourselves is: What is a simulation in general and what is a brain simulation in particular? Roughly, the idea is to create an object that resembles the functional and (if possible also) the structural characteristics of the brain in order to improve our understanding and ability to predict its future development. Simulating the brain could be defined as an attempt to develop a mathematical model of the cerebral functional architecture and to load it onto a computer in order to artificially reproduce its functioning. But why should we reproduce brain functioning?

I can see three reasons: describing, explaining and predicting cerebral activities. The implications are huge. In clinical practice with neurological and psychiatric patients, simulating the damaged brain could help us understand it better and predict its future developments, and also refine current diagnostic and prognostic criteria.

Great promises, but also great challenges ahead of us! But let me now turn to challenges that I believe can be envisaged from a philosophical and conceptual perspective.

A model is in some respects simplified and arbitrary: the selection of parameters to include depends on the goals of the model to be built. This is particularly challenging when the object being simulated is characterized by a high degree of complexity.

The main method used for building models of the brain is “reverse engineering.” This is a method that includes two main steps: dissecting a functional system at the physical level into component parts or subsystems; and then reconstructing the system virtually. Yet the brain hardly seems decomposable into independent modules with linear interactions. The brain rather appears as a nonlinear complex integrated system and the relationship between the brain’s components is non-linear. That means that their relationship cannot be described as a direct proportionality and their relative change is not related to a constant multiplier. To complicate things further, the brain is not completely definable by algorithmic methods. This means that it can show unpredicted behavior. And then to make it even more complex: The relationship between the brain’s subcomponents affects the behavior of the subcomponents.

The brain is a holistic system and despite being deterministic it is still not totally predictable. Simulating it is hardly conceivable. But even if it should be possible, I am afraid that a new “artificial” brain will have limited practical utility: for instance, the prospective general simulation of the brain risks to lose the specific characteristics of the particular brain under treatment.

Furthermore, it is impossible to simulate “the brain” simply because such an entity doesn’t exist. We have billions of different brains in the world. They are not completely similar, even if they are comparable. Abstracting from such diversity is the major limitation of brain simulation. Perhaps it would be possible to overcome this limitation by using a “general” brain simulation as a template to simulate “particular” brains. But maybe this would be even harder to conceive and realize.

Brain simulation is indeed one of the most promising contemporary scientific enterprises, but it needs a specific conceptual investigation in order to clarify its inspiring philosophy and avoid misinterpretations and disproportional expectations. Even, but not only, by lay people.

If you want to know more, I recommend having a look at a report of our publications so far.

Michele Farisco

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Articles may be retracted if ethics is neglected

Pär SegerdahlWhen a scientific article is retracted, it means that the article should never have been published and that data and conclusions from the study should not be used to underpin future research.

Articles are often retracted when it is found that the authors acted fraudulently. They may have been careless, or cheated, or have plagiarized someone else’s (or their own!) previous work. Retracted articles may still be available for reading, but with a notice that they are retracted, and with explanations of the reasons behind the decision.

A rarer and less known reason to retract scientific articles is that the study reported does not satisfy ethical requirements for the protection of research participants.

Human research participation should be voluntary and research on humans must first be approved by an ethical review board. Editors of medical journals are bound by the same requirements. They increasingly require that authors state that the research they want to publish has an ethics approval.

How common is it that published articles are retracted because ethical requirements were neglected? How do editors motivate their decision? And what happens afterwards – are the articles cited and used despite the retraction?

Ethical retractions are uninvestigated, but in an article in the journal Accountability in Research Yusuke Inoue (former guest researcher at CRB) and Kaori Muto, present a study of articles retracted for ethical reasons:

One difficulty they mention is that unethical research may still produce scientifically valid data, results and conclusions – although neglect of ethics is a strong warning sign that other demands may have been neglected. Editors must therefore strike a balance between the requirement to retrospectively protect research participants and the scientific value of the article and its results. And if one decides to retract the article for ethical reasons, the research study may have to be repeated with new participants, which is also ethically problematic.

Yusuke Inoue and Kaori Muto studied retracted medical papers in English in the period 1981-2011. They found that the first ethical retractions did not occur until 2000 (2 articles). The number was then relatively constant (14 articles 2001-2010), but increased dramatically in 2011 (83 articles) – most of them related to a research scandal around anesthesiology researcher Joachim Boldt.

Most retraction notices stated as reason for the decision, simply “lack of ethical review.” However, editors rarely explained the decision more closely, for example, if they judged that the whole study was fraudulent, or judged that the study was well done but lacked ethical review. It then becomes unclear how to assess the contents of the retracted article.

Inoue and Muto also found that the majority of articles that were retracted for ethical reasons continued to be quoted. In some cases, it could be established that citations were deliberately misleading (as when authors cite their own retracted articles without mentioning that they are retracted). In other cases, however, retracted articles were cited perfectly legitimately, to specify that data from them had been excluded.

Inoue and Muto’s conclusion is that editors need to explain more clearly the reason behind their ethical retractions, so that future researchers can better assess the content of the articles. Moreover, discussion is needed on how data from articles that were retracted for ethical reasons may be used.

While we’re discussing scientific misconduct, I take the opportunity to link to an American dissertation that shows that often when misconduct is revealed by the Office of Research Integrity, it does not lead to the retraction of articles:

The number of retracted articles thus gives a poor measure of the extent of scientific misconduct. There are many “fraudulent articles” in circulation!

Pär Segerdahl

We recommend readings - the Ethics Blog

Dissertation on palliative care of children with cancer

Pär SegerdahlApproximately every fifth child who gets cancer in Sweden dies from their disease. In her dissertation work at CRB, Li Jalmsell studied the care of these children at the end of their life from both the child’s and the parents’ and siblings’ perspectives.

One of her findings is that one doesn’t generally recognize that the child’s cancer is beyond cure until very close to death, giving little time to plan palliative care based on personal preferences.

Jalmsell also did surveys with parents and siblings who lost a child/sibling, and interviewed children with cancer. The children themselves emphasize in the interviews that they want honest information, even when it is bad. But they also want the conversations to be hopeful and contain a plan ahead; and they want to be informed simultaneously with the parents (not after the parents).

The psychological suffering of parents and siblings who lost a child/sibling seems to be influenced by different factors. Parents’ suffering after the child’s death is much dependent on how they experienced the child’s suffering near the end of life. The parents’ suffering also tended to increase if the child underwent bone marrow surgery before death, perhaps because of the hope of a cure that such an intense treatment awakens.

Siblings generally felt ill-informed and unprepared for the child’s death. Siblings who didn’t get opportunity to talk about what they could expect tended to feel anxiety long after the child’s death.

Jalmsell also stresses the importance of parents talking about death with their child. Other studies have shown that parents who don’t talk often regret this afterwards; while parents who talk with the child about death don’t regret it. In Jalmsell’s own study the parents say that the initiative to talk about death often came from the child, often through stories. The child understands its situation.

If you want to read Li Jalmsell’s dissertation, you can find it here:

It emphasizes the importance of open communication with the whole family.

The public examination is on Friday, September 25, at 09:00, at the Uppsala Biomedical Centre (BMC), room A1:111a. The examination will be conducted in English. Welcome to listen and ask questions!

Pär Segerdahl

 

Interesting Big Data-symposium on video

Pär SegerdahlMany posts on the Ethics Blog are about how new possibilities to collect and process large amounts of data change the horizon for medical research.

But “Big Data” makes its entry also in the humanities and social sciences. How does the horizon change there? How is the understanding of humans and of society affected when processing large amounts of data opens up a new field of vision for humanists and social scientists?

A symposium in Gothenburg last summer took up the issues, I saw at Christian Munthe’s blog (“Philosophical Comment”). He links to a video recording from the symposium and I link to Christian’s blog post; that way you’ll find both the blog and the video:

When you have time, take a look – the presentations are exciting!

Pär Segerdahl

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