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

Month: December 2015

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

We recommend readings - the Ethics Blog

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

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


Trust, responsibility and the Volkswagen scandal

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.

This post in Swedish

We challenge habits of thought : the Ethics Blog

Why are bioethicists conducting empirical studies?

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

This post in Swedish

ethics needs empirical input - the ethics blog