Tag: future prospects (Page 8 of 10)

Direct to consumer genetic tests: soon history?

5 November, 2014 / Pär Segerdahl / 0 Comments

More and more companies are selling genetic tests directly to consumers. You don’t need a prescription. Just go online and order a test and you’ll get a cotton swab with which you scrape the inside of your cheek.

You then send the cotton swab to a laboratory and await the answer: What do your genes have to say about your disease risks?

These tests may seem harmless. It’s only a bit of information. No one can be harmed by some information, it may seem.

But the information is sensitive and can have consequences. For example, the test can provide information about genetic predispositions that you can transfer to your children. Paternity can be determined. You can get information that you are at risk for a certain form of cancer or can suffer side effects from the drug that your doctor prescribed. In addition, information about risk of disease can cause you to begin to exhibit symptoms prematurely!

Are the tests reliable? How should the information be interpreted in your case? What should you do with it? – Can one really market such tests directly to consumers as any commercial product?

No, it looks like it soon will be impossible. The US Food and Drug Administration (FDA) recently informed a number of companies that sell genetic tests directly to consumers that the tests will from now on be treated as medical devices. Such devices must meet specific quality requirements and be approved product by product.

Also in Europe a change is underway, going even further. The European Parliament is proposing a regulation that would more or less ban selling genetic tests directly to consumers.

This EU proposal is described and discussed in an article in Science, written by Louiza Kalokairinou, Heidi Howard (from CRB) and Pascal Borry:

“Changes on the horizon for consumer genomics in the EU”

From having been regarded as harmless, the authors write, genetic tests are now proposed to be classified as medical devices on risk level C (on a scale from A to D). In addition, a medical prescription will be required to get a genetic test, and the test must be ordered by a physician. Genetic counseling must also be given.

Genetic tests are here to stay, but presumably in a different context than today. The proposed EU regulation requires a medical context for genetic testing, the authors write: a patient-doctor relationship.

The article ends asking: Will doctors’ waiting rooms soon to be filled by people who want prescriptions for genetic tests? Can doctors keep up with the rapid development of the field, which is required to interpret new genetic tests and assess how these can benefit individual users?

Whereupon I ask: If it is unclear if even doctors can manage the genetic tests, how could one have assumed that individual consumers could do it?

Pär Segerdahl

How can the brain be computer simulated?

29 October, 2014 / Pär Segerdahl / 0 Comments

A computer simulated human brain – that undoubtedly sounds like science fiction. But the EU flagship project, the Human Brain Project, actually has computer simulation of the brain as an objective.

What will be accomplished during the ten years that the project is financed will presumably be simulations of more limited brain functions (often in the mouse brain). But the proud objective to simulate the human brain has now been formulated in a serious research project.

But what does “computer simulation of the brain” mean?

In an article in the journal Neuron Kathinka Evers and Yadin Dudai discuss the meaning of simulation of the brain. Kathinka Evers from CRB leads the philosophical research in the EU Project and Yadin Dudai is a neuroscientist from the Weizmann Institute of Science who also works in the project.

The article combines philosophical and scientific vantage points to clarify the type of simulation that is relevant in neuroscience and what goals it may have. Several of the questions in the article are relevant also for the simulation of more limited brain functions. For example, the question if the ability to make a computer simulation of a brain function means that you understand it.

The most thought-provoking questions, however, concern the big (but distant) goal to simulate a whole human brain. Is it possible in principle, given that the brain is embedded in the body and is in constant interaction with it? Is it possible, given that the brain interacts not only with the body but also with a social environment?

Does simulating the brain require that one also simulates the brain’s interaction with the body and the social context in which it operates? Kathinka Evers thinks so. The attempt to simulate the brain is too limited if one does not start out from the fact that the brain is in constant interaction with an environment that constantly changes it.

The brain must be understood (and simulated) as an “experienced brain.”

Suppose that one day one manages to simulate an experienced human brain in intensive interaction with a bodily and social environment. Has one then simulated a brain so well that one created consciousness?

The questions in the article are many and breathtaking – read it!

Pär Segerdahl

Conversations with seemingly unconscious patients

23 September, 2014 / Pär Segerdahl / 0 Comments

Research and technology changes us: changes the way we live, speak and think. One area of research that will change us in the future is brain research. Here are some remarkable discoveries about some seemingly unconscious patients; discoveries that we still don’t know how to make intelligible or relate to.

A young woman survived a car accident but got such serious injuries that she was judged to be in a vegetative state, without consciousness. When sentences were spoken to her and her neural responses were measured through fMRI, however, it was discovered that her brain responded equivalently to conscious control subjects’ brains. Was she conscious although she appeared to be in a coma?

To get more clarity the research team asked the woman to perform two different mental tasks. The first task was to imagine that she was playing tennis; the other that she visited her house. Once again the measured brain activation was equivalent to that of the conscious control subjects.

She is not the only case. Similar responses have been measured in other patients who according to international guidelines were unconscious. Some have learned to respond appropriately to yes/no questions, such as, “Is your mother’s name Yolande?” They respond by mentally performing different tasks – let’s say, imagine squeezing their right hand for “yes” and moving all their toes for “no.” Their neural responses are then measured.

There is already technology that connects brain and computer. People learn to use these “neuro-prosthetics” without muscle use. This raises the question if in the future one may be able to communicate with some patients who today would be diagnosed as unconscious.

– Should one then begin to ask these patients about informed consent for different treatments?

Here at the CRB researchers are working with such neuro-ethical issues within a big European research effort: the Human Brain Project. Within this project, Kathinka Evers leads the work on ethical and societal implications of brain research, and Michele Farisco writes his (second) thesis in the project, supervised by Kathinka.

Michele Farisco’s thesis deals with disorders of consciousness. I just read an exciting book chapter that Michele authored with Kathinka and Steven Laureys (one of neuro-scientists in the field):

Externalization of consciousness: scientific possibilities and clinical implications

They present developments in the field and discuss the possibility of informed consent from some seemingly unconscious patients. They point out that informed consent has meaning only if there is a relationship between doctor/researcher and patient, which requires communication. This condition may be met if the technology evolves and people learn to use it.

But it is still unclear, they argue, whether all requirements for informed consent are satisfied. In order to give informed consent, patients must understand what they agree to. This is usually checked by asking patients to describe with their own words what the doctor/researcher communicated. This cannot be done through yes/no-communication via neuroimaging. Furthermore, the patient must understand that the information applies to him or her at a certain time, and it is unclear if these patients, who are detached from the course of everyday life and have suffered serious brain injury, have that understanding. Finally, the patient must be emotionally able to evaluate different alternatives. Also this condition is unclear.

It may seem early to discuss ethical issues related to discoveries that we don’t even know how to make intelligible. I think on the contrary that it can pave the way for emerging intelligibility. A personal reflection explains what I mean.

It is tempting to think that neuroscience must first determine whether the patients above are unconscious or not, by answering “the big question” how consciousness arises and becomes disturbed or inhibited in the brain. Only then can we understand these remarkable discoveries, and only then can practical applications and ethical implications be developed.

My guess is that practical technological applications, and human responses to their use, rather are venues for the intelligibility that is required for further scientific development. A brain does not give consent, but perhaps a seemingly unconscious patient with neuro-prosthesis. How future technology supported communication with such patients takes shape – how it works in practice and changes what we meaningfully can do, say and think – will guide future research. It is on this science-and-technology supported playing field that we might be able to ask and determine what we thought neuroscience had to determine beforehand, and on its own, by answering a “big question.”

After all, isn’t it on this playing field that we now begin to ask if some seemingly unconscious patients are conscious?

Ethics does not always run behind research, developing its “implications.” Perhaps neuro-ethics and neuroscience walk hand in hand. Perhaps neuroscience needs neuro-ethics.

Pär Segerdahl

Philosophers and their predecessors

11 August, 2014 / Pär Segerdahl / 0 Comments

Philosophy is often seen as a tradition. Each significant philosopher studied his significant predecessors, found them faulty in various respects, and embarked to correct them. Aristotle corrected Plato, Descartes corrected the scholastics, and Heidegger corrected the whole history of thought since the pre-Socratics.

Philosophy appears as a long backward movement into the future, driven by close reading of predecessors. Such an image is understandable in a time when philosophy is being eaten up by the study of it. We are like archaeologists of thought, trying to reconstruct philosophy through the traces it left behind in our bookshelves. We thus imagine that philosophers were above all readers of philosophical texts: super-scholars with amazing skills of close reading, enabling them to identify the weak points of their predecessors’ work.

The paradox of this view of philosophy is that the textual residues we study don’t look like scholarly texts. Perhaps because philosophers weren’t moving backwards into the future, meticulously studying earlier texts, but were above all sensitive to the times in which they lived and tried to face the future well. That is how they “read” their predecessors.

Pär Segerdahl

Philosophical scholarship defuses new ways of thinking

28 July, 2014 / Pär Segerdahl / 0 Comments

What is called “philosophy” is pursued today mostly by scholars who study philosophical authors and texts, and who learn to produce certain types of comments on philosophical ideas and concepts. Such study is interesting and important, and can be compared with literary scholarship.

A problem that I highlighted in my latest post, however, is a tendency to conflate the scholarly study of philosophy with… philosophy. Today, I want to exemplify three consequences of such conflation.

A first consequence is a taboo against thinking for oneself, like the canonized philosophers of the past, who legitimize the study of philosophy, once did. Only “great” philosophers, whose names can be found as entries in philosophical encyclopedias, can be excused for having philosophized for themselves, and without proper citation methods.

A related consequence is a sense of scandalous arrogance when philosophy is carried out as once upon a time. Since only great and already canonized philosophers are allowed to think for themselves, people who tenaciously pursue thinking will appear like pretentious bastards who believe they already have a name in the history of philosophy and, worst of all, claim to be studied!

A third and more serious consequence is that philosophical scholarship, if it is conflated with philosophy, defuses new ways of thinking. New ways of thinking are primarily meant to be adopted, or to provoke people to think better. Learned commentaries on new and original ways of thinking are interesting and important. However, if the scholarly comments are developed as if they brought out the real philosophical content of the proposed thoughts, the new thinking will be reduced to just another occasion to develop the study of philosophy… as if one did the thoughts a favor by bringing them safely home to “the history of philosophy.”

You don’t have to be great, canonized or dead to think. That is fortunate, since thinking is needed right now, in the midst of life. It just appears essentially homeless, or at home wherever it is.

Pär Segerdahl

Our publications on biobanks and registries

11 June, 2014 / Pär Segerdahl / 0 Comments

Biomedical research does not always require research subjects who are prepared to experimentally try new treatments or diets. Increasingly, research on health and disease is carried out on stored biological samples and personal data in different registries.

Handling human biological material and personal data raises unique ethical issues. People who volunteer as participants in such research are unlikely to be harmed by experimental treatments, but their samples and data are stored for a long time. Samples and data can also be shared by several groups, and be used in different research projects.

One can therefore speak of unique ethical challenges in biobank and registry research. At the Centre for Research Ethics and Bioethics, we have long been working to clarify these challenges and discuss ways to deal with them responsibly. Our work has resulted in numerous publications, often together with biomedical researchers and in international collaborations.

In May 2014, we published an updated compilation of these publications:

Biobank and registry ethics report

The above link will take you to the online version, which also contains further links to the articles that are available online. A printed report can be ordered from crb@crb.uu.se.

The report contains abstracts of all the publications. What is new is that we now arranged the publications thematically:

Ethical frameworks and policy
Regulatory aspects
Informed consent
Ethical review
Integrity concerns
Trust
Genetic testing
Incidental findings
Commercialization
Public and patient perceptions
Rare diseases
Children & biobanks & genetics

We hope you take a look at the report and find something that interests you!

Pär Segerdahl

Building European infrastructures for research

28 May, 2014 / Pär Segerdahl / 0 Comments

The European Union is traditionally about creating an internal market, where goods, services, labor and capital can move freely between member states.

Lately there have been efforts to create also European infrastructures for research, where researchers in the different member states can collaborate more efficiently, and compete on a global “research market.” A new tool for such European governance of research is the European Research Infrastructure Consortium, abbreviated ERIC.

If at least three member states hand in a joint application, the Commission can establish an ERIC – an international organization where the involved member states jointly fund and manage a European infrastructure for research in some area. In November 2013, an ERIC was established for biobank research: BBMRI-ERIC, placed in Graz, Austria.

Understanding what an ERIC is and whether BBMRI-ERIC has tools to make the diverse regulations for biobanking in different EU member states more uniform, is not easy. However, a “Letter” in the European Journal of Human Genetics addresses both issues:

“ERIC: a new governance tool for Biobanking”

The letter is written by Jane Reichel, Anna-Sara Lind, Mats G. Hansson, and Jan-Eric Litton who is the Director General of BBMRI-ERIC.

The authors write that although the ERIC lacks substantial tools to make the regulative framework for biobanking more uniform, it provides a platform where researchers and member states can collaborate developing better ways of navigating the complex legal and ethical landscape. The ERIC also facilitates administration, owning and running of equipment and employment of staff on a long-term basis, thus enabling a time perspective proper to research infrastructures (rather than individual research projects). It also provides opportunities to develop common standards for biobanking activities (e.g., handling of samples) that make biobanks function better together.

Finally, because of the required regular contacts with the Commission and representatives of all EU member states, channels are opened up through which the interests of research can be communicated and influence policy areas like data protection.

Read the letter if you are interested to know more about this new way of building European infrastructures for research.

Pär Segerdahl

Open biobank landscapes

14 May, 2014 / Pär Segerdahl / 0 Comments

Last week I wrote about the transition from organizing science as a tree of knowledge that once in a while drops its fruits onto society, to organizing research as part of knowledge landscapes, where the perspective of harvesting, managing and using the fruits is there from the beginning.

That the proud tree is gone might seem sad, but here we are – in the knowledge landscape, and I believe the development is logical. As a comment to the previous post made clear, many fruits fell from the old tree without coming into use.

The notion of knowledge landscapes sheds light on the attempt by BBMRI.se to build infrastructure for biobank research. The initiative can be viewed as an attempt to integrate research in broader knowledge landscapes. Supporting research with an eye to the interests of patients is a new way of managing research, more oriented towards the fruits and their potential value for people than in the era of the tree of knowledge.

The novelty of the infrastructural approach to biobanking isn’t always noticed. In Sweden, for example, the biobank initiative LifeGene was met with suspicion from some quarters. In the debate, some critics portrayed LifeGene as being initiated more or less in the interest of a closed group of researchers. Researchers wanted to collect samples from the population and then climb the tree and study the samples for god knows which purposes.

Those suspicions were based on the old conception of science as a high tree, inaccessible to most of us, in which researchers pursue “their own” interests. The aim with LifeGene, I believe, is rather to integrate research in a knowledge landscape, in which research is governed more by the interests of patients.

We mustn’t underestimate the challenges such a reorganization of research has to deal with, the forces that come into play. I merely want to suggest a new way of surveying and thinking about the transition – as a change from approaching science as a high tree of knowledge to integrating research in open knowledge landscapes.

If you want to read more about research in knowledge landscapes, you find Anna Lydia Svalastog’s article here, and the network where these ideas originated here.

In September 2014, the third conference, HandsOn: Biobanks, is organized, now in Helsinki. Academics, industry, doctors, patient groups, policy makers, public representatives and legislators are invited to share knowledge and experiences. As in previous conferences in the series, there is an interactive part, The Route, in which biobanking processes can be followed from start to finish, with ample opportunities for discussion.

View the conference as part of maintaining open biobank landscapes, with research as one of several integrated components.

Registration is open.

Pär Segerdahl

From tree of knowledge to knowledge landscapes

7 May, 2014 / Pär Segerdahl / 0 Comments

Science was long revered as free and self-critical pursuit of knowledge. There were hopes of useful applications, of course, but as fruits that once in a while fall from the tree of knowledge.

In a thought-provoking article in the Croatian Medical Journal, Anna Lydia Svalastog describes how traditional reverence for science and devout hope of fruits from above in practice disappeared with World War II.

Researchers who saw science as their calling instead found themselves called up for service in multidisciplinary projects, solving scientific problems for politically defined aims. Most famous is the Manhattan project, intended to develop an atomic bomb to alter relative military strengths.

This way of organizing research has since then become the rule, in a post-war condition in which research initiatives aim towards altering relative economic strengths between nations. Rather than revering science, we value research in project format. We value research not only in economic terms, I want to add, but also in terms of welfare, health and environment.

From the late 1970s, political and economic interest in research shifted from physics to the life sciences and biotechnology. Svalastog mentions examples such as genetically modified organisms (GMO), energy wood and biological solutions to pollution. It is difficult to say where research ends and applications begin, when interest in applications governs the organization of research from the outset.

The main question in the article is how to understand and handle the new condition. How can we understand the life sciences if society no longer piously anticipates applications as fruits from above but calculates with them from the beginning?

Svalastog uses a new concept for these calculated fruits: bio-objects. They are what we talk about when we talk about biotechnology: energy wood, GMO, cultivated stem cells, vaccines, genetic tests and therapies, and so on.

The point is that science doesn’t define these objects on its own, as if they still belonged to science. Bio-objects are what they become, in the intersection of science, politics and society. After all, vaccines don’t exist and aren’t talked about exclusively in laboratories, but a parent can take the child to the hospital for vaccination that was decided politically to be tax-financed.

Instead of a tree of knowledge stretching its fruit-bearing branches above society, we thus have flatter knowledge landscapes in which a variety of actors contribute to what is described in the article as bio-objectification. The parent who takes the child to the hospital is such an actor, as is the nurse who gives the vaccine, the politicians who debate the vaccination program, the journalists who write about it… and the research team that develop the vaccine.

Why do we need a concept of bio-objectification, which doesn’t reverently let the life sciences define these objects in their own terms? I believe, to understand and handle our post-war condition.

Svalastog mentions as an example controversies about GMO. Resistance to GMO is often described as scientifically ignorant, as if people lived in the shadow of the tree of knowledge and the solution had to consist in dropping more science information from the tree. But no links with levels of knowledge have been established, Svalastog writes, but rather with worldviews, ethics and religion.

What we need to handle our condition, Svalastog maintains, is thus the kind of research that was neglected in the post-war way of organizing research. We need humanistic research about knowledge landscapes, rather than instinctive reactions from a bygone era when the tree of knowledge was still revered.

I presume that this humanistic research too will be performed in project format, where humanistic scholars are called up for research service, studying the contexts within which bio-objects are understood, handled and valued.

Undeniably, however, some interesting thoughts about our condition here hover more freely above the knowledge landscapes.

Pär Segerdahl

Biobank news: ethics and law

23 April, 2014 / Pär Segerdahl / 0 Comments

The second issue of the newsletter from CRB and BBMRI.se is now available:

Biobank perspectives: current issues in biobank ethics and law

This April issue contains four interesting news items about:

New international research cooperation on genetic risk information.
The new Swedish law on registers for research on heritage, environment and health.
The legislative process of developing a European data protection regulation.
A new article on trust and ethical regulation.

You’ll also find a link to a two-page PDF-version of the newsletter.

Pär Segerdahl

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Tag: future prospects (Page 8 of 10)

Direct to consumer genetic tests: soon history?

How can the brain be computer simulated?

Philosophers and their predecessors

Philosophical scholarship defuses new ways of thinking

Our publications on biobanks and registries

Open biobank landscapes

From tree of knowledge to knowledge landscapes

Biobank news: ethics and law

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Welcome to the Ethics Blog!

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