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

Category: Musings (Page 18 of 18)

Introspective genomics and the significance of one

As a philosopher, I am familiar with the image of the solitary thinker who studies the human mind though introspective study of his own. A recent article in the journal Cell reminds me of that image, but in unexpected “genomic” guise.

To achieve statistical significance, medical researchers typically engage large numbers of research subjects. The paper in Cell, however, has only one research subject: the lead author of the paper, Michael Snyder.

Snyder and colleagues studied how his body functioned molecularly and genetically over a 14-month period. Samples from Snyder were taken on 20 separate occasions. A personal “omics profile” was made by integrating information about his genomic sequence with other molecular patterns gathered from the samples, as these patterns changed over time.

Early results indicated that Snyder was genetically disposed to type 2 diabetes. Strangely enough, the disease began to develop during the course of the study. Snyder could follow in detail how two virus infections and the diabetes developed molecularly and genetically in his body.

Snyder changed his life style to handle his diabetes. When he informed his life-insurance company about the disease, however, his premiums became dramatically more expensive.

The introspective paper illustrates the potential usefulness, as well as the risks, of what has been dubbed “personalized medicine.” Here I want speculate, though, on how this new paradigm in medicine challenges scientific and intellectual ideals.

When philosophers introspectively studied the human mind, they took for granted that what they found within themselves was shared by all humans. The general could be found completely instantiated in the particular.

The particular was for philosophers no more than a mirror of the general. What they saw in the mirror was not the individual mirror (it was intellectually invisible). What they saw in the mirror was a reflection of the general (and only the general was intellectually visible).

That simple image of the relation between the particular and the general was discarded with Darwin’s theory of the origin of species. A species has no essence shared by all individuals. Therefore, to achieve scientific generality about what is human, you cannot rely on one human subject only. You need many subjects, and statistics, to achieve intellectual vison of general facts.

A noteworthy feature of the paper under discussion is that we seem partly to have returned to the era of introspective research. We return to it, however, without the discarded notion of the particular as mirror of the general.

New molecular techniques seem to open up for study of what previously were simply individual cases without significance in themselves. For personalized medicine, each subject unfolds as a universe; as a world full of significant processes.

By studying the “genomic universe” of one person and following it over a period of time time, Snyder and colleagues could discern processes that would have been invisible if they had superimposed data from several distinct research subjects.

This new significance of the particular is fascinating and novel from an intellectual perspective. Has the traditional contempt for the particular case been overcome in personalized medicine?

Speaking personally as a philosopher, I cannot avoid seeing this aspect of personalized medicine as congenial with certain philosophical tendencies.

I am thinking of tendencies to investigate (and compare) particular cases without magnifying them on a wall of philosophical abstraction, as if only the general was intellectually visible. I am thinking of serious attempts to overcome the traditional contempt for the particular case.

We seem to have arrived at a new conception of one and many; at a new conception of the particular case as visible and worthy of study.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Bioethics is not a community of interests

There is a persistent image of bioethics as being in symbiosis with the powerful interests of medical research and the pharmaceutical industry.

Examples that could confirm such suspicions multiply, unfortunately, since pharmaceutical companies have begun to hire bioethicists as consultants. After critique, Glenn McGee, the former editor of the American Journal of Bioethics, recently resigned from a Texas based stem-cell company.

There obviously is a real risk that bioethicists end up representing powerful interests. Everyone who claims to be a bioethicist should be attentive to this question:

  • “Has my thinking become unjust and partial?”

In their academic setting, however, bioethicists not only can but should be driven by this question of truthfulness. You not only can but should weigh a multitude of values and perspectives against each other. You not only can change your mind, but should always consider the need to do so.

Openness strengthens you as a bioethicist.

This would not be the case if you represented a company, an organization, or an authority. In such positions, it is predetermined which views, which interests and which regulations you have a professional duty to look after. If you don’t disseminate the right views or look after the right interests, you are disloyal to your organization and should consider quitting.

It is the other way round with bioethics as an academic activity. If you protect privileged views as if you belonged to a community of interests, if you reason one-dimensionally without allowing opposed perspectives to be seen – then you should consider quitting.

If the functionary of an organization asks, with a pounding heart, “Have I become disloyal?”, the ethicist’s worrying question is, “Have I become loyal?”

If bioethics is vulnerable to accusations of partiality, then, it is because ethical thinking presupposes an openness that typically is absent within communities of interest (and they abound).

This ethical openness, paradoxically, may lay behind some of the accusations that bioethics legitimizes power. For ethical openness hardly is politically radical or ideologically rigid.

Where political organizations protect certain interests and work towards particular goals, ethical thinking has a responsibility to highlight other values that might be undermined if the organization got all the power it hopes to attain.

There seems to be certain tension between ethical openness and political radicalness. Ethics might seem to maintain status quo… from the point of view of various forms of political activism. Ethics might seem to protect power… from the point of view of communities of interest that strive to achieve commendable but limited goals.

There are so many good causes. There are so many groups with commendable interests. Dare I add that even industry and research have values that can deserve our attention?

My own belief is that the open-mindedness with which the best forms of bioethics can be associated – the difficult art of doing justice to many possibilities where there is a temptation to defend a rigid position – can have a profound democratic function.

Voices that strive to be impartial are important.

Pär Segerdahl

We think about bioethics : www.ethicsblog.crb.uu.se

After-birth abortion as a logical scale exercise

How should one respond when ethicists publish arguments in favor of infanticide?

In the current issue of Journal of Medical Ethics, two philosophers argue that what they call “after-birth abortion” should be permissible in all cases where abortion is (even when the newborn is healthy).

Not surprisingly, soon after BioEdge covered the article, the news spread on the internet… and the authors of the article unfortunately even received death threats.

If you know the spirit of much current academic philosophy, you will not be surprised to know that the authors defended themselves by statements like:

  • “This was a theoretical and academic article.”
  • “I’m not in favour of infanticide. I’m just using logical arguments.”
  • “It was intended for an academic community.”
  • “I don’t think people outside bioethics should learn anything from this article.”

The editor of JME, Julian Savulescu, defended the decision to publish by emphasizing that JME “supports sound rational argument.”

In a similar vein, the philosopher John Harris, who developed basically the same rational considerations in support of infanticide, felt a need to clarify his position. He never defended infanticide as a policy proposal. – What did he do, then?

He engaged in “intellectual discussions.”

What I find remarkable is how some of our most significant human ideals – logic and rationality – seem to have acquired a technical and esoteric meaning for at least some professional philosophers.

Traditionally, if you build on logic and rationality, then your intellectual considerations ought to concern the whole of humanity. Your conclusions deserve to be taken seriously by anyone with an interest in the matter.

The article on after-birth abortion, however, is JUST using logical arguments. It is ONLY presenting a sound rational argument. It is MERELY an intellectual discussion. To me, this sounds like a contradiction in terms.

Moreover, because of this “merely” logical nature of the argument, it concerns no one except a select part of the academic community.

Still, logic and rationality are awe-inspiring ideals with a long human history. Philosophers draw heavily on the prestige of these ideals when they explain the seriousness of their arguments in a free liberal society.

When people in this free society are troubled by the formal reasoning, however, some philosophers seem surprised by this unwelcome attention from “outsiders” and explain that it is only a logical scale exercise, composed years ago by eminent philosophers like Singer, Tooley and Harris, before academic journals were accessible on the internet.

I repeat my question: how should one respond when ethicists publish what they present as “rational arguments” in favor of infanticide?

My answer is that one should take them seriously when they explain that one shouldn’t take their logical conclusions too seriously. Still, there is reason for concern, because the ideals they approach so technically are prestigious notions with a binding character for most of us.

Many persons think they should listen carefully when arguments are logical and rational.

Moreover, JME is not a purely philosophical journal. It is read by people with real and practical concerns. They are probably unaware that many professional philosophers, who seem to be discussing real issues, are only doing logical scale exercises.

This mechanized approach to the task of thinking, presented on days with better self-confidence as the epitome of what it means to be “serious and well-reasoned,” is what ought to concern us. It is problematic even when conclusions are less sensational.

Pär Segerdahl

Following the news - the ethics blog

Apes become pregnant with language in culture

During the past century, a series of optimistic researchers set out to teach language to apes. This could have been no more than a queer expression of human naiveté… if it wasn’t for the fact that one of them succeeded.

Who succeeded? The one who avoided teaching the apes!

Why did the one who avoided teaching succeed?

I believe the answer lies dormant in an insightful objection to ape language research (ALR). The objection is that language is not like a strange property of human beings. It is not like a rare skill that we can loosen from our humanity and then empirically test if it can be transferred to nonhumans.

We must not confuse this insightful objection with its sophistic variant.

  1. The sophistic objection says that ALR is a contradiction in terms. The question whether “nonhumans” can have “language” cannot even be raised, because language is so profoundly entrenched in what we are as humans. The philosophical task with regard to ALR can only be this critical one: to illuminate the difference between all purported examples of “ape language” and our human language.
  2. The interesting objection says that ape language research cannot consist merely in teaching apes demarcated skills. The question is not whether apes can be taught language. The question is if we can help them become beings in whom language is as deeply entrenched as it is in us.

“Becoming someone” is more profound than “learning something.”

The secret behind success, Sue Savage-Rumbaugh discovered, was to initiate apes into a cultural environment with meaningful others who already were speakers (i.e., humans). And then wait and see. Wait and see if the apes would respond to this cultural environment as human children do… by spontaneously becoming speakers.

Every parent experiences that language isn’t taught to children but somehow grows within them, as if they were pregnant with language.

Sue had the same experience with Kanzi, Panbanisha and Nyota. They spontaneously developed comprehension of her spoken English, and they began to speak to her by (among other things) pointing to word symbols on a portable keyboard.

Culture transformed the apes’ way of being apes. Culture made them pregnant with language. Language began to “grow” in them.

Apes in the entertainment industry are specially trained to do apparently human things. These apes strike us as comical because they are not the kind of beings that can “carry” human skills.

In successful ALR the emphasis is not on training but on stimulating apes to become beings that genuinely “carry” human traits. Kanzi, Panbanisha and Nyota are not aping us. They have become sufficiently like us to be our co-inhabitants in language.

A short history of ape language research can be found on the Great Ape Trust website. Why training must be avoided in ALR is investigated in Kanzi’s Primal Language.

Pär Segerdahl

Understanding enculturated apes - the ethics blog

Trapped in our humanity?

Being human, can I think nonhuman thoughts? Can the world I perceive be anything but a human world?

These philosophical questions arise when I read Cora Diamond’s and Bernard Williams’ humanistic portrayals of our relations to animals.

A certain form of “human self-centeredness” is often deemed unavoidable in philosophy. If I talk about a dog as being nervous, for example, I use language. But since this language is my language, and I am human, the dog’s “nervousness” would seem to have its ultimate reference point in my humanity.

When I try these thoughts, they make it look as if we, in some almost occult sense, were trapped in our humanity. The more we reach out toward other bodily beings, the more entrenched we become in our own spirituality. Language may open up an entire world for us. But since language is human, it makes us a solipsistic being that cannot but experience a fundamentally human world.

Believing in an “ineliminable white or male understanding of the world” would be prejudiced, Williams writes. But our humanity cannot, of course, be eliminated as if it were an old prejudice. Therefore: “A concern for nonhuman animals is indeed a proper part of human life, but we can acquire it, cultivate it, and teach it only in terms of our understanding of ourselves.”

Similar thoughts appear in Diamond’s notion that the kind of moral response to animals that can motivate vegetarianism (such as her own) is an “extension to animals of modes of thinking characteristic of our responses to human beings.”

Perhaps I misunderstand them. But the idea seems to be that we become human primarily with other humans, and only thereafter relate to a “nonhuman” world on the basis of the more primordial human one. Humanism, in such philosophical form, could be called: the idea of “humanistic immanence.”

What is valuable in the idea of humanistic immanence is what it has in common with all good philosophy: the self-critical occupation with our own thinking. What I find more questionable is what appears to be an unfounded assumption: that we become human primarily with other humans (a purification of what is human).

One does not have to be a “post-humanist” to make the following observation:

  • “… in the lives of many people animals occupy a place which is, in certain respects, as central as that occupied by other human beings. In particular, certain animals have a quite fundamental place in the lives of many young children; and a child’s use of the words ‘pain’, ‘fear’ and so on may be acquired as immediately in connection with the pet cat as in connection with human beings.” (David Cockburn)

Consider, in the light of this observation, Diamond’s important idea that, “we learn what a human being is in – among other ways – sitting at a table where WE eat THEM.” Take this notion of human becoming to ape language research, where apes and humans meet daily over food and have conversations that may concern such matters as what to eat, who eats what, and who eats with whom.

What happens when humans share food with apes, sitting down on the ground rather than around a dinner table? What happens to our “humanity” and to their “animality”? What happens to us as men and women when apes communicate attitudes to how humans of different sex and age should behave? What happens to our moral understanding when apes view some visitors as bad and urge their human friends to bite them?

My (human) notion of nervousness may in part have developed through interaction with our sensitive Great Dane when I was a child. What I learned through these interactions may only thereafter have been extended to human nervousness.

I am human and so is my language. But the manner in which I became human (and acquired language) transcends, I want to say, the purified human sphere of “humanistic immanence.”

My ineliminable humanity already is more than human. What are the consequences for philosophy?

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Can infrastructure for biobank research make ethical notions obsolete?

In a comment to what I posted earlier about the decision of the Swedish Data Inspection Board to stop LifeGene, Åke Thörn asks what I mean by saying that

  • “LifeGene represents a new reality in the making.”

Since the question has deep interest, I want to answer it here, in a new post. I will use a simile to explain my intended meaning.

Suppose that rather than discussing biobank ethics, we were playing a form of chess with the strange feature that the chessboard sometimes changes. Squares turn into circles. Or the entire chessboard turns into a rhomb.

These changes of the chessboard make the old rules obsolete. What is “straight” and what is “diagonal” on a chessboard with the shape of a rhomb? The rules need to be reconsidered!

Research ethics and ethical review can be compared to games played on chessboards that sometimes change and require that rules and basic notions are reconsidered. What I meant in my previous post was that LifeGene represents such a basic change of the research ethical chessboard.

How should the “aim” of biobank infrastructure be described, given that infrastructure is not a research project with the aims of individual biobank projects? Do people turn into “research participants” when their ten-year old blood samples are used in new studies?

We cannot always cherish old ethical notions – as if there were no such things as TIME and CHANGE. We sometimes need to rethink rules and basic notions.

I hope these considerations explain my understanding of ethics as sensitive to changing times, and my notion of LifeGene as a “new reality.”

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

The Swedish Data Inspection Board stops large biobank

Swedish biobank research suffered serious defeat last week. The Swedish Data Inspection Board decided that the ongoing collection of biological samples and health data to the large biobank LifeGene is against the law.

Karolinska Institutet (that runs LifeGene) must now stop collecting further data and is not allowed use already collected data. The reason for the decision is said to be the loosely formulated purpose of LifeGene: “future research.” Participants cannot give consent to anything that vague, the Data Inspection Board argues.

Well, that openness happens to be the point of this new type of biobank!

LifeGene is not a research project, nor is it part of a research project. LifeGene is intended as infrastructure of future biobank projects. Researchers are invited to apply for access to the biobank within specific studies of, for example, genetic and environmental risk factors for widespread diseases.

The more specifically formulated research purposes enter later in the process!

Collecting hundreds of thousands of biological samples and health data anew, each time researchers want to ambitiously study widespread diseases, is unfeasible. Therefore, LifeGene was developed as standing infrastructure of such biobank research in the future.

… And now it has been decided that developing such infrastructure is illegal. Because the purpose cannot be specified as in the research projects that later use the biobank!

This is a category mistake, as philosophers say when what is fundamentally distinct is conflated. In this case, research infrastructure is conflated with research projects.

Other posts about biobanks on this blog are directly related to the risk of the decision that the Swedish Data Inspection Board made:

My views can be summarized in two simple points:

  1. Infrastructure for biobank research must not be treated as if it were one of the projects meant to use it.
  2. My given blood sample does not make me a research participant (who must give consent each time the sample is used).

LifeGene represents a new reality in the making. It remains for the authorities, for legislators, and for all of us to better understand it!

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Research ethics in a new situation

Let me introduce a topic that will be recurrent on this blog! It is the question whether research ethics and the practices of ethical review can give rise to their own ethical problems. Do we create new ethical problems while we handle old ones?

Research ethics developed in a different situation than our present one. The starting-point was inhuman: terrible experiments with prisoners in concentration camps during World War II. Thereafter, a series of research scandals where research subjects were harmed in different parts of the world. Simplifying somewhat, research ethics developed to protect people from being forced into harmful research. One such ethical protection was the demand that people cannot be used as research subjects if they haven’t been properly informed about the project, about its possible risks, and have given their consent. Another protection was a legislated ethical review apparatus that can reject ethically problematic research proposals.

Ethical review and information and consent procedures are integral parts of contemporary medical research. Thereby, however, they change the situation for the research ethics of today. As a result of its success, research ethics may create its own ethical problems! If the previous threat primarily was injustices and acts of cruelty towards research subjects, new threats appear on the ethically regulated horizon. In a number of cases, one can ask if research subjects are overprotected against their own interest.

Pregnant women and children can be vulnerable and are therefore regularly excluded from clinical research. It may seem comforting to know that these groups are safe from possibly harmful research. The result of the well-intentioned protection, however, is that these groups are subjected to possibly harmful medical treatments as patients. We don’t know how treatments that are effective on non-pregnant adults work on children and pregnant women, nor the dosage. Vulnerable groups are protected as research subjects, but as a result of that protection they are put to risk as patients. Clearly, new ethical problems arise here because of the way we handle the old ones!

I’m not claiming that the old problems have disappeared. Just read The Independent (Monday, 14 November 2011): “Without consent: how drug companies exploit Indian guinea pigs.” But perhaps we have become a little too habituated to the rhetoric of victimizing research, if we fail to see and address the questions that arise as a result of the present ethical regulation and practice. If research ethics is not open to unforeseen ethical problems related to its own role in contemporary research, I believe it risks becoming self-sufficient and ideological.

We discussed these self-critical ethical questions last year at the conference, “Is Medical Ethics Really in the Best Interest of the Patient?” Conference articles were published in the April issue of JIM, 2011. I can inform you that several related articles from CRB are in the pipeline. I’ll reflect on them as they are published.

Pär Segerdahl

We think about bioethics : www.ethicsblog.crb.uu.se

Integrity of anonymous donors

In a comment on our Swedish blog (Etikbloggen), Joanna Forsberg asks if her integrity can be breached if a sample that she donated to a biobank is anonymized (so that it cannot be traced to her) and then is reused in new biobank research. Since the sample is not traceable to her, no one can approach her and ask for consent.

I will probably return to this question. I’m inclined to view an anonymized biological sample as a datum of humankind. A coded sample can become a datum of a specific individual, namely, if the code key is employed so that the donor is traced. The anonymous sample, however, cannot even become sample of “me,” since there is no code key. There is only some tissue and general information, like “male, 48 year old.” It does even not make sense, I want to say, then, to talk about my integrity in relation to anonymous samples.

I notice here that my reasoning is a little bit like that of an experimenter talking about what he or she wants to measure in the laboratory. But is my integrity like an experimental variable? Should bioethicists reason as if ethics was an experimental science?

Pär Segerdahl

We think about bioethics : www.ethicsblog.crb.uu.se

Have you cited a captive ape?

If you are writing on animal welfare, you may one day cite Savage-Rumbaugh, Wamba, Wamba and Wamba (2007). If you do, you will have cited one human and three captive bonobos.

I cited them last month, presenting a paper at the symposium, “Zoo-ethnographies,” arranged by the Centre for Gender Research in Uppsala. Citing them felt quite natural to me, since I’ve met the authors several times. Although only the human can write, all four understand spoken English and eloquently express their opinions about what you say and do. How do they communicate? Well, to focus on the nonhumans: the first day I visited the bonobos I happened to breach the rule, “just sit and observe,” by chatting with a caretaker just outside Panbanisha’s enclosure. Panbanisha heard when the rule was explained to me, and she looked offended and pointed QUIET on her portable keyboard with several hundred word symbols. I shivered with a combination of shame and metaphysical vertigo. A little later, I could not resist the temptation to touch her son’s hand. He ran to mother who was even more upset than before. She approached me with the keyboard and pointed to another symbol. A researcher asked, “Do you want to communicate with Pär?” She answered with the characteristic short high-pitched vocalization that she, Kanzi and Nyota use to answer questions in the affirmative. Her finger remained firmly on the symbol until I identified it and exclaimed: “She’s calling me a MONSTER!”

Being the first author, Sue Savage-Rumbaugh did the following. She asked the bonobos if they wanted to participate in a conversation about what they see as important for their welfare. They answered in the affirmative. During the tape-recorded conversation she presented a list of welfare items that she guessed might be important to them. It was presented as a series of yes-no questions. If there was uncertainty about a reply, the question was rephrased. Not all suggestions met with the bonobos’ approval. The final list of 12 items was presented in tabular form in the article.

Are Kanzi, Panbanisha and Nyota rightly listed as co-authors? I’ve witnessed the subtlety with which they respond to caretakers’ daily questions about their existence in captive environments. They undoubtedly had more direct verbal input to the article and clearer awareness and approval of their participation than many humans who’ve been listed as co-authors. They certainly were informants who answered questions in conversation with a researcher. But sometimes researchers, especially in ethnography, publish with their informants. I think that choice was particularly apt in this case.

The article concerned the welfare of this group of captive apes. Ever since Kanzi was young, Savage-Rumbaugh treated captivity not as an accidental feature of Kanzi and his family. The fact of captivity cannot be concealed with enrichment items and environments that appear natural for the species (a theme in the article). It is the core of the animal’s existence. If you take captive animals seriously and want to know what their lives can become like, you cannot hide captivity beneath a veneer of “naturalness.” You need to open-mindedly negotiate captivity on a daily basis. Kanzi, Panbanisha and Nyota are experts on their captive existence. Their language developed in negotiation of it. If you cite the article on their welfare as captive language competent apes, you certainly cite them.

Pär Segerdahl

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