The Ethics Blog

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

Year: 2015 (Page 1 of 5)

Fourth issue of our newsletter about biobanks

22 December, 2015 / / 0 Comments

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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Ethical questions raised by experiencing another culture (By Amal Matar)

16 December, 2015 / / 0 Comments

Amal MatarWhen I first moved to Sweden, I was pretty excited to explore a new country and experience Swedish culture and life. In many ways I had not expected the extent of the difference between what I was familiar with and Swedish culture. I assumed, naively, that I would be in a familiar setting because I had been to other countries. One of my preconceptions was seeing all Western countries as similar, another was believing that European countries shared the same values and culture. But I was proven wrong.

Being brought up in Cairo, Egypt, I was raised in a comparatively restrictive patriarchal family-oriented environment where gender roles are very specific. Although this is by no means uniform and there are exceptions to the rule as well as big variation among Egyptian urban and rural contexts, the overarching tendencies in terms of law and societal expectations are quite gender specific. For example, modesty is expected from women at all times in terms of dress and behavior, even when they are ill or seeking reproductive health advice.

Another dominant aspect is hierarchy. It exists not only in the academia and other working environments but also at family levels and even between spouses and between siblings. The older expect respect and obedience and should not be challenged even politely.

In contrast, Swedish culture is based on gender equality, where paternal leave is encouraged, and women’s representation is sometimes ensured by affirmative action. In addition, personal autonomy is embedded in the culture and laws are set to emphasize autonomy particularly in healthcare contexts. Hierarchy is not prominent and obedience is not expected. Respect and politeness are appropriate for all ages.

Navigating the healthcare system was a challenge I faced. It is quite structured and systematic, which in a way ensured efficiency, but this was novel to me. In addition, I had difficulty explaining my symptoms to my GP because of language barriers. She spoke neither English nor Arabic. Later, this was resolved because I was transferred to another GP who spoke English fluently.

This made me ponder on the challenges immigrants and refugees coming from the Middle East encounter upon arrival and the conflict they feel between their value system and the Swedish one. Might this be the reason why migrant women use less healthcare services compared to their counterpart? How culturally sensitive does Swedish healthcare need to be to accommodate the growing numbers of refugees? And would healthcare professionals, in order to be culturally sensitive, be expected to rethink and readdress their cultural norms? Is there a line to be drawn between being culturally sensitive and advocating beneficence? Are these two values (cultural sensitivity and beneficence) culturally relative? Which values should take the upper hand?

These are questions that my experience of moving to Sweden raised. I’m not sure how to answer them but I tend to think that there are possibly two scenarios that can ensue. Either the encounter of these two value systems can, over the long run, evolve into a third one. Or each party accepts their counterpart’s value system even when they don’t fully approve.

You can read more about my pondering in a more specific bioethical field, namely, reproductive ethics, by following this link.

Amal Matar

We like real-life ethics : www.ethicsblog.crb.uu.se

 

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Trust, responsibility and the Volkswagen scandal

15 December, 2015 / / 0 Comments

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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Why are bioethicists conducting empirical studies?

8 December, 2015 / / 2 Comments

Pär SegerdahlBioethicists often make empirical studies of how the public, or relevant groups, perceive organ donation, euthanasia, or research participation; or how they perceive research that can be considered controversial, like embryonic stem cell research.

An objection to empirical bioethics sometimes made is that empirical evidence cannot settle ethical issues. Suppose a survey shows strong support for euthanasia among the public. Does that make euthanasia right?

No, it would be a joke to reason as if a survey gave evidence that euthanasia probably is right (but more studies are needed before we can be sure). Ethical issues are determined neither by vote nor by questionnaires or focus-group interviews.

So why are such studies conducted? How can empirical data serve as a basis for ethical reasoning? Have bioethicists begun to make the mistake of drawing conclusions from what is the case to what should be the case?

These questions appear fundamental. Are empirical methods legitimately used in ethics?

I think that examples of good uses can be given. A questionnaire or interview study with medical staff can exhibit ethical problems in health care practices that otherwise would have been unnoticed (like Mona Pettersson’s study of nurses’ experiences of do not to resuscitate orders). Empirical studies can also show how more values are ​​at stake than those traditionally taken into account in bioethics. Many examples could be given, but let me instead use an analogy:

Suppose someone asks you for advice on a delicate matter. Will you not ask questions to that person, to better understand the context; what is at stake; what the actual problem is? Simplified, one could say that this is what empirical bioethics does. It is not about obtaining empirical evidence of what is right and wrong. It is about getting a better grasp of the problem: what is at stake, what it is about.

The words “empirical,” “facts” and “evidence” are often used rhetorically in debates: to support views and positions. Probably it is such intellectual debate rhetoric one thinks of when empirical bioethics is questioned. Bioethicists are seen as shrewd debaters who try to conjure forth empirical support for ideas of right and wrong. But empirical work is not primarily about answering questions, but about asking questions (as in the analogy).

Empirical bioethics deepens the question, rather than seeks artful shortcuts to the answer. The deepening of the question gives friction to move forward through the real problem. We must not be fooled by the intellectual rhetoric of empirical justification when bioethicists make empirical studies to reason more sensitively about the actual problem.

Pär Segerdahl

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Ethics in the midst of life

25 November, 2015 / / 0 Comments

Pär Segerdahl“You don’t treat another human like that!” Thus we may speak, with a trembling voice that simultaneously reveals our confidence. Perhaps to a person who harasses someone else. You just don’t treat people like that!

But what gives us the right to object? From where does our confidence come? Must it not be from the concept of the human? Perhaps we should bracket our passionate voice and instead soberly examine the concept “human being”: so that we may purely intellectually understand why it is wrong to harass people. Perhaps our conceptual investigation reveals some sort of inviolable dignity in human essence. The rest follows from the pure laws of thought.

I believe Socrates did something similar. He shook Athenians’ confidence in life through conceptual investigations that he indicated would lead them to the ultimate source of true confidence; to knowledge of the pure ideas of what is good and right. The Athenians’ mistake was that of simply being confident in life; as humans are confident. That confidence in life made them blind to the purer and more fundamental knowledge that can be reached by turning the gaze toward the concepts themselves.

These tendencies to purify what is intellectually binding in morality make me think of inventors of perpetual motion machines. They dream of machines that, through their ingenuity, can do what no ordinary machine can do. They just move and move, all by themselves, without any connections with the energy flows of nature and life. For they are so cleverly made immune to friction and objections.

The problem is that the purity of these unobjectionable constructions is achieved at the cost of no longer speaking to people; only to other dreamy seekers of perpetual motion machines.

The trembling voice characterizes ethics. Our confidence in life has no ingenious source in reason itself, which we should seek instead of being confident. This does not prevent us from reflecting on our ethical responses and develop our way of living and thinking, allowing our trembling voice to deepen as we seek our way through life.

Ethics is in the midst of life. A moral perpetual motion machine outside of any such living context cannot be constructed. There are limits to how reasonable one can be.

Pär Segerdahl

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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

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Open data access is regulated access

11 November, 2015 / / 0 Comments

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

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Culturally sensitive ethics

3 November, 2015 / / 0 Comments

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

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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

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Two kinds of nonsense?

21 October, 2015 / / 0 Comments

This is just a short follow-up to last week’s post: Thinking to the limits of language.

The attentive reader may have noticed that I spoke there of two kinds of transgressions of limits of language:

  1. A tendency to make a sweeping gesture and say, “Space is everywhere; it surrounds me.”
  2. A tendency to interpret the limit that is transgressed in (1), and which can be highlighted by saying, “Space does not exist in space,” as a profound truth indicating that space itself must be something hitherto unthought.

If space isn’t out there, surrounding me, then what is it? And thus one moves on, to explore this radical question about space in a hitherto unthought sense.

Both tendencies give rise to nonsense. I want to say that (1) gives rise to rather innocent nonsense talk. Almost anyone can feel the temptation to make that sweeping gesture, but it often ends there. Tendency (2), on the other hand, reveals a philosophically minded person, and it is only the beginning of a possibly life-long investigation.

Now, it has been argued, by Wittgensteinian philosophers, that there is only one kind of nonsense: pure nonsense (like “piggly wiggle tiggle”). But if we put nonsense in context and consider its manner of arising, then I believe we need to distinguish between at least two kinds of nonsense: in order to know what we deal with when we deal with philosophy.

Significant philosophers typically acknowledge the limit that we easily transgress; but their interpretation of it as “deep” turns it into a starting line for philosophy. And thus they transgress it anyway, but in their own way.

Pär Segerdahl

Minding our language - the Ethics Blog

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