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

Month: May 2015

Where is consciousness?

 

Michele FariscoWould it be possible to use brain imaging techniques to detect consciousness and then “read” directly in people’s brains what they want or do not want? Could one, for example, ask a severely brain injured patient for consent to some treatment, and then obtain an answer through a brain scan?

Together with the philosopher Kathinka Evers and the neuroscientist Steven Laureys, I recently investigated ethical and clinical issues arising from this prospective “cerebral communication.”

Our brains are so astonishingly complex! The challenge is how to handle this complexity. To do that we need to develop our conceptual apparatus and create what we would like to call a “fundamental” neuroethics. Sound research needs solid theory, and in line with this I would like to comment upon the conceptual underpinnings of this ongoing endeavor of developing a “fundamental” neuroethics.

The assumption that visualizing activity in a certain brain area can mean reading the conscious intention of the scanned subject presupposes that consciousness can be identified with particular brain areas. While both science and philosophy widely accept that consciousness is a feature of the brain, recent developments in neuroscience problematize relating consciousness to specific areas of the brain.

Tricky logical puzzles arise here. The so called “mereological fallacy” is the error of attributing properties of the whole (the living human person) to its parts (the brain). In our case a special kind of mereological fallacy risks to be embraced: attributing features of the whole (the brain) to its parts (those visualized as more active in the scan). Consciousness is a feature of the whole brain: the sole fact that a particular area is more active than others does not imply conscious activity.

The reverse inference is another nice logical pitfall: the fact that a study reveals that a particular cerebral area, say A, is more active during a specific task, say T, does not imply that A always results in T, nor that T always presupposes A.

In short, we should avoid the conceptual temptation to view consciousness according to the so called “homunculus theory”: like an entity placed in a particular cerebral area. This is unlikely: consciousness does not reside in specific brain regions, but is rather equivalent to the activity of the brain as a whole.

But where is consciousness? To put it roughly, it is nowhere and everywhere in the brain. Consciousness is a feature of the brain and the brain is more than the sum of its parts: it is an open system, where external factors can influence its structure and function, which in turn affects our consciousness. Brain and consciousness are continually changing in deep relationships with the external environment.

We address these issues in more detail in a forthcoming book that I and Kathinka Evers are editing, involving leading researchers both in neuroscience and in philosophy:

Michele Farisco

We want solid foundations - the Ethics Blog

 

Online research ethics: A pedagogic challenge

Stefan ErikssonResearchers, scientists and professionals who are somehow involved in research, need to develop an ability to detect ethical problems. But we also need to learn how to do something about them. – How can we learn?

The Centre for Research Ethics & Bioethics (CRB) has developed a web-based training in research ethics. And now we are looking forward to a pedagogic challenge!

Research ethics is not only following rules and regulations. It is also about training your ethical competence. We have decided to use a new approach: a web based training that requires commitment from both teacher and student.

We emphasize interactivity. Research ethics is about learning from history and understanding how norms affect what we do. But research ethics is also about reflecting on your own attitudes and actions. This is why we believe that talking with others is important. We have added e-meetings to the training where we give every participant opportunities to discuss research ethical problems. In addition, every lesson has a theme and we use chatrooms to discuss related cases.

Last term we tested this concept on participants from Europe, Egypt and Singapore. Now it is time to launch our training and open it for participants from all over the world. Our aim is high: We want to offer the most complete, updated end enjoyable training you can imagine!

Online distance training has some advantages in itself: It is flexible for the student, relatively cheap and there are good opportunities to have individual support for your studies. Add the possibilities that a modern, digital learning environment can offer: video films that can be interactive, e-meetings, quizzes, TED lectures, discussions in chat rooms and more offer opportunities for both variety and having fun, learning and reflection on several different platforms. Sites that allow users to try randomizing participants in a study can create a greater understanding of how it is done rather than just reading about it. We collect all these resources in one place for students to reach whenever they want. This way, the focus is on students learning instead of teaching.

Having students from different backgrounds adds strength to the training, but it is also a challenge. An important aspect is to try and capture the different experiences and circumstances they bring to the course. Coming from different cultural environments, they will meet different challenges when they try to implement an ethical stance in their work. Participants can learn a lot from each other and increase their understanding of the conditions that other’s work under. But positions and traditions can also seem difficult to understand, or hard to put forth to others.

Online research ethics training for medicine & the life sciences - Centre for Research Ethics & Bioethics (CRB)Distance learning risks creating a situation where some participants are unable to take responsibility for their studies and hesitate to ask for help. Creating a positive, allowing atmosphere is not something that can be realized through the design of tasks or user interfaces (although those things matter too). It is something that you convey by the way to act towards others. There is a challenge for the teacher here: trying not to inhibit the student’s activities, or ending up on the outside of the group’s dynamic and development.

As a teacher, you soon realize that you have to work hard on both content and form. A difficulty is balancing the student’s freedom to plan the work to fit a schedule (that is probably quite busy already), with the aim to have interactive parts of the training that everyone has to be there for: both in time and progress. During the pilot it became obvious that students found it hard to follow the common time plan.

In the end, when people from different places can meet each other in a learning environment, exciting opportunities present themselves. One course can mix traditional teaching with different pedagogic models and technology. The challenge lies in finding a balance between the focus the training needs and the freedom that is so appreciated, and between structure and the endless pedagogic possibilities that this format offers. For the teacher, the task becomes to organize and guide students on the different paths that move them along in their individual learning processes. A challenge that I find both enjoyable and important!

Want to try it? Go to www.ethicstraining.crb.uu.se

Stefan Eriksson

We care about education

Risks are not just about numbers

Jessica Nihlén FahlquistOn a daily basis, we are informed about risks. The media tell us that obesity increases the risk of cardiovascular diseases and that we can reduce the risk of Alzheimers by eating the right kind of food. We are confronted with the potential danger of nanoparticles and mobile phone radiation. Not to mention the never ending discussion about nuclear power. Some news are more serious than others, but we cannot avoid risk information as such.

In addition to the media, government agencies inform the public about risks. The Swedish National Food Agency encourages people to eat fish because of its potential to reduce the risk of cardiovascular disease. But we should also reduce the intake of wild-caught salmon and herring due to the health risks associated with mercury.

Contemporary society has been described as a risk society, simply put a society preoccupied with risks. We invest a great amount of our common resources in risk management and communication. Sometimes, it appears as though risks are communicated in a hasty way. As soon as a risk is “found,” it is assumed that the responsibility of the government and possibly of the media is to inform the public. It is not acknowledged that what is considered to be a risk is not always straightforward and value neutral.

Whereas experts define risk as probability multiplied by negative outcome and weigh risks against benefits, several studies have shown that lay people conceive of risk in a much more complex and nuanced way. According to the expert notion, a risk is acceptable if the benefits outweigh the risks. However, individual lay people include other factors, for example, whether risks and benefits are distributed fairly and whether the risk has been taken voluntarily or it is one person exposing another to the risk. Studies in risk perception have also been acknowledged by ethicists and philosophers, who point out that not only do factors like voluntariness and fairness de facto influence people’s notion of the acceptability of risk, but we should care about these values. They are normatively important.

These insights about risk as ethically relevant and value-laden should influence how risks are managed and communicated in society. One example is how government agencies view risks and benefits in the case of infant feeding. Breastfeeding is seen as the best option in terms of risks and benefits. Mothers are expected to breastfeed their babies if they want to do what is best for their baby. Scientific and value-laden statements are mixed in the information provided to new parents. Women, adoptive parents and male gay couples who cannot breastfeed are negatively affected by this message. Women who cannot breastfeed oftentimes feel guilty and think that they are harming their babies for life by not breastfeeding. This should be taken into account when communicating with parents-to-be and new parents. The relationship between government agencies and ordinary people is inevitably unequal and the former should take responsibility for the effects of risk communication.

Another example is the H1N1 virus and the Pandemrix vaccination program in Sweden in 2009. The government informed the public that the vaccine was completely safe and that everybody should get vaccinated for solidarity reasons. After some time, it turned out that a group of teenagers had their lives more or less destroyed because they got narcolepsy probably due to the vaccination. This deserves a thorough ethical discussion.

There are currently signs that some people now hesitate to have their children take part in the regular vaccination program, including protection against, for example, measles. The regular vaccines are much more tested and substantially safer than Pandemrix. The opposition against vaccines are generally based on misconceptions and deficient studies. However, instead of mocking “ignorant” people and thinking that it is possible to change the perception and attitude of anxious parents by informing more about numbers, the anxiety and the lacking trust should be taken seriously. A respectful dialogue is needed.

This does not mean that the opponents of vaccination have the same and as accurate information as proponents of vaccination, who have science on their side. However, risks are not just about numbers!

Read more:

Jessica Nihlén Fahlquist

We care about communication - the Ethics Blog

 

Letting people choose isn’t always the same as respecting them

Jennifer Viberg, PhD Student, Centre for Research Ethics & Bioethics (CRB)Sequencing the entire genome is cheaper and faster than ever. But when researchers look at people’s genetic code, they also find unexpected information in the process. Shouldn’t research participants have access to this incidental information? Especially if it is important information that could save a life if there is treatment to offer?

The personal benefits of knowing genetic information can vary from individual to individual. For one person, knowledge might just cause anxiety. For another, genetic risk information could create a sense of control in life. Since different people have different experiences, it could seem tempting to leave it for them to decide for themselves whether they want the information or not.

Offering participants in genetic research a choice to know or not to know is becoming more common. Another reason for giving a “freedom of choice” has to do with respecting people by allowing them to make choices in matters that concern them. By letting the participant choose, you acknowledge that he or she is a person with an ability to make his or her own choices.

But when researchers hand over the decision to participants they also transfer responsibility: A responsibility that could have consequences that we cannot determine today. I recently wrote an article together with colleagues at CRB about this in Bioethics. We argue that this freedom of choice could be problematic.

Looking at previous psychological research on how people respond to probabilities, it becomes clear that what they choose depends on how the choice situation is presented. People choose the “safe” outcome before taking a risk in cases where the outcome is phrased in a positive way. But they are more prone to taking a risk when the result is phrased in a negative way, despite the fact that the outcome is identical. If a participant is asked if he or she wants information that could save their life, there is a risk that they could be steered to answering “yes” without considering other important aspects, such as having to live with anxiety or subjecting themselves to medical procedures that might be unnecessary.

The benefit of incidental findings for individual participants is hard to estimate. Even for experienced and knowledgeable genetic researchers. If we know how difficult the choice situations are, even for them, and if we know how psychological processes probably will steer the participants’ choices, then it seems that it is hardly respectful to give the participants this choice.

There are good intentions behind giving participants freedom to choose, but it isn’t respectful if we can predict that the choices won’t be free and well grounded.

If you want to learn more, you find further reading on CRB’s web, and here is a link to our article: Freedom of choice about incidental findings can frustrate participants’ true preferences

Jennifer Viberg

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