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

Category: Musings (Page 11 of 18)

Gene editing: a threat to the moral ecosystem?

Pär SegerdahlA few years ago it was discovered that bacteria can protect themselves against viruses by cutting the viruses’ DNA at specific positions. The discovery is the basis for new, easier and more precise ways to make changes in the genome. Researchers have begun to talk about “cutting and pasting” in the genome; about “editing” the genome.

The new gene-editing technique has been applied to plant breeding. But it can, of course, be applied elsewhere too. And as often is the case, the issues appear extra controversial when applications to humans are considered.

I read an intellectual debate between a proponent of therapeutic use of the technique on humans (Julian Savulescu), and an opponent (Margaret Somerville). (You find it here.) The opponent used an analogy to summarize her position, which I cannot resist commenting upon here on the Ethics Blog. Here is the analogy (as I render it):

  • Today we are acutely aware that we must take responsibility for our environment, for the physical ecosystem. But the same can be said of our metaphysical or moral ecosystem. We must care about our values, beliefs, attitudes, principles and narratives. Genetically editing a human embryo, perhaps to remove a disease gene, may have good consequences from an individual perspective. But it threatens the moral ecosystem at its roots: it contradicts the respect for human life.

Say what you want, but it is a dramatic analogy! Maybe a little too dramatic. For essentially the same threat has been depicted many times before, when new forms of biotechnology appeared on the horizon. If this kind of threat was real, morality should lie in ruins since long ago. But we quickly forget and it is always only the latest techniques that Threaten Morality at its Foundation.

I believe that the idea of ​​a major technological threat to morality is based on intellectualizing both technology and morality. One attaches enormous significance to the fact that aspects of the technology can be described with certain words, such as “editing” or “designing.” The description, ​​”designing a child,” sounds like it logically clashed with another intellectualization – of morality as a system of propositions about what a “person” is, about what “respect” is, and about what is “right and wrong.”

The idea of an apocalyptic threat is thus based on reading the new technique and morality literally, so that it sounds as if the technique contradicted the basic tenets of morality.

Is there nothing to worry about, then? Should we not care about important values? Of course we should. My point is that in practice this looks differently than it verbally sounds like.

When new biotechnologies are implemented in society and put to use, this occurs in specific practical contexts where there are recognized problems that one wants to solve or treat. These applications are regulated, ethically and legally.

In vitro fertilization (IVF), another technique, is embedded in its specific contexts. Within these contexts, the technique solves problems for people. But it hardly threatens morality by, on some general and verbal level, contradicting the basic tenets of a moral system – such as “the respect for human life.” Rather, the technology has become a new way to concretely respect people and take their problems seriously.

The practical aspects disappear in the intellectualization of the issues, with its focus on words and theses. But it is the living contexts we have to take responsibility for. That is where we find the respect and the disrespect. That is where the problem lies.

Some moral problems are just false readings, overinterpretations of words.

Pär Segerdahl

This post in Swedish

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

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

Ethics in the midst of life

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

This post in Swedish

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

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

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

Two kinds of nonsense?

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

Thinking to the limits of language… and then onwards

Pär SegerdahlI read last summer Immanuel Kant’s enormous work, Critique of Pure Reason. It struck me that one of the “methods” he uses could be described as: thinking to the limits of language.

How is such thinking done?

Like this, for example: I see a cloud in the sky and think that the cloud is up there (I indicate “where” with a pointing gesture). Thereafter, I think more abstractly that the same can be said about the part of space that the cloud fills. That part of space is also up there (I point again).

– But where is space itself, as a whole?

Here it is tempting to make a sweeping gesture and say, “Space is everywhere; it surrounds me.” But precisely that I cannot do, say or think. Because then I would treat space as if it were somewhere. I would treat space as if it existed, in space.

My thinking took me to a limit of language, which it is tempting to transgress. So far, so good. But then it struck me that Kant also has a definite interpretation of his method.

He interprets the limit he acknowledged as if it were fundamental and primary: as if it were a source that enables our seeing of clouds and other things (here and there). Space itself does not exist (in space): space is the possibility of seeing things (here and there). This possibility is subjective, “within us,” Kant says; but that cannot be meant in the ordinary spatial sense.

Kant thus interprets limits of language as sources. Speaking, writing and thinking about these sources, he develops purified philosophical prose. He develops extra-ordinary forms of language, possessing absolute authority since they speak of what comes first: the sources within us of what we ordinarily experience and chatter about.

So although Kant indeed acknowledges the limit (by pointing out that space does not exist in space), he nonetheless contrives esoteric language to systematically present its nature and function as a source. The limit inspires, as if it were a philosophical starting line.

Is there an alternative to Kant’s interpretation? The alternative is that the limits of language hold for all of us, not least as thinkers. Thinking to the limits of language, as we did, does not lead to sublime discoveries of “first truths,” although it sounds profoundly true to say: “space does not exist in space.”

Paradoxically, it is when we reach the limit, and acknowledge it as a limit, that the temptation to transgress it arises. For our acknowledgement of the limit appears profoundly true and worth its own investigation. It strikes us as an “original” truth preceding all ordinary truths about, for example, that cloud in the sky.

And in that spirit we move onwards, as if summoned by the perceived profundity of the limit.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

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

We like challenging questions - the ethics blog

« Older posts Newer posts »