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

Year: 2013 (Page 1 of 5)

What are absolute borders made of?

I return to the question in my previous post. I was wondering why biotechnological developments repeatedly invite moral responses in terms of borders that shouldn’t be transgressed by humans. (Think of stem cell research using human embryos.)

What is fundamental in these responses? Is it the absolute border? Do people already have stable notions of borders that shouldn’t be transgressed by humans, as part of semi-metaphysical views of life? Do they respond, “Controversial!”, because they deem some new practice to be transgressing a border that already is in place within their view of life?

Or is the notion of the border itself part of the reaction? Is “the absolute border” reactive rather than the source of the reaction?

I’m inclined to say that the “absolute border” arises with and through the reaction. Let’s call it the intellectual part of the reaction. It is how the reaction presents itself as legitimate; it is how the reaction transforms itself into a reason against the new developments.

The notion of an “absolute border” is how the reaction translates itself into the “space of reasons.”

If so, the recurrent reaction is almost bound to misunderstand itself in accordance with my first suggestion: the border will be perceived as basic, and the reaction will present itself as rational verdict: “The absolute border is being transgressed here; therefore, a moral response is in order!”

We must not forget that entire views of life can be reactive. Even when they are beautiful and admirable human achievements, their function can be that of digesting reactions and providing them with meaning.

My conclusion is that if we want to understand these recurrent reactions, we must not be fooled by how they spontaneously translate themselves into “the space of reasons.” We need a practice of back-translation.

We seem bound to repeatedly misunderstand ourselves. Our much praised faculty of understanding easily becomes a faculty of misunderstanding.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Uniquely controversial: why is new biotechnology often so extraordinarily upsetting?

Artificial insemination, genetically modified organisms, and attempts in synthetic biology to create artificial life have this in common: they tend to provoke moral responses in terms of borders that should not be transgressed.

A recent article by Thomas Douglas, Russell Powell, and Julian Savulescu discusses synthetic biology from this point of view:

They analyze arguments that claim that producing artificial organisms from non-living components is morally significant in the sense that it constitutes “the” ultimate transgression of the border that should not be transgressed.

They quite successfully show that the arguments fail. Certainly, producing artificial life can in some cases instantiate attitudes of hubris; it can produce environmental risks; it can encourage problematic reductionism; and it does produce organisms that, since they lack evolutionary history, have unclear moral status within biocentric accounts of moral status.

But: hubris and environmental risks can characterize other endeavors as well, and there is no reason to assume that creating organisms from non-living components is more likely to sustain hubris or pose environmental threats than modifying existing organisms. Moreover, reductionism is rejected by most biologists, and there is no reason to assume that synthetic biology is uniquely capable of encouraging reductionism. Finally, the fact that artificial organisms have unclear moral status in biocentric accounts is irrelevant, since what really matters for moral status “is not origin, but mental capacity.”

What the article less successfully addresses, though, is the question why people repeatedly want to say: this is an extraordinary activity, it transgresses a border that should not be transgressed. For it has been said before, about other forms of biotechnology. Synthetic biology is not unique in this respect.

The sense of extraordinary transgression is translated in the article into an intellectual claim that synthetic biology is the extraordinary transgression. By turning the recurrent sense of extraordinary transgression into such a specific claim about synthetic biology, the article in my view makes it too easy for itself. It fails to address the original sense of extraordinary transgression.

The question in my headline still awaits its answer.

Pär Segerdahl

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

Direct-to-consumer genetic testing: empowering people to hurt themselves?

There are two tempting pictures of the human. One is that we (ideally) are autonomous individuals who make rational choices on the basis of information. The other picture is that our individuality is coded in our DNA.

These pictures work in tandem in the marketing of direct-to-consumer genetic testing. The website of the personal genomics company, 23andMe, features their DNA “spit kit.” On the half-open lid you can read: Welcome to you.

That’s the DNA picture: Your DNA contains the information about you. For 99 dollars and a saliva sample you’ll get to know who you are.

If you click Order now, you encounter the other picture: Knowledge is power. By buying this product, you’ll be empowered to better manage your health and wellness. You’ll get information about diseases you risk developing and diseases you are less likely developing, and can plan your life accordingly.

That’s the autonomy picture: You are the driver of your life. For 99 dollars and a saliva sample, you are empowered as rational decision-maker about your health.

The combination of the two pictures is a powerful marketing campaign that can be followed on YouTube.

The US Food and Drug Administration (FDA) recently sent a warning letter to 23andMe, urging them to immediately stop marketing the test. The device isn’t just any commercial product, but is to be seen as medical technology. This implies certain quality standards:

  • “…we still do not have any assurance that the firm has analytically or clinically validated the PGS for its intended uses…”

FDA also expresses concern about public health consequences if the test doesn’t work reliably. A false positive risk assessment for breast or ovarian cancer “could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.”

Another concern is that patients who receive assessments of their personal drug responses may begin to self-manage their doses or abandon their therapies.

Genetic tests will no doubt play significant roles in the future. But genetic risk information is tremendously complex and its predictive value difficult to assess. The danger is that the deceptively simple marketing rhetoric of empowering individuals to take charge of their lives currently rather might empower people to hurt themselves.

The Swedish Foundation for Humanities and Social Sciences decided this autumn to support a joint European research program on genetic risk information. The program is led by Mats G. Hansson at CRB. Click the link below for a summary of the program:

FDA’s warning letter to 23andMe underlines the timeliness of the new program. More on this in the future!

Pär Segerdahl

Following the news - the ethics blog

Beware of the vanity of “autonomy”

Important words easily become totalitarian. They begin with communicating some humanly important point, so we listen with attention. But then it is as if the words suffered from vanity and assumed that our attention was directed at them; not at what they were used to say.

Over time, the words become like grammatical codes of importance in human life.

A word that underwent such a process in bioethics is autonomy. It was first used to communicate an urgency, namely, that patients and research participants must be respected. They have a right to information about what is about to happen, and to decide whether they want to undergo some treatment or participate in some experiment.

Patients and research participants have this understandable right to autonomy.

But as the word was used to communicate this urgency, the importance seemed to move into the word. If patients have a right to “autonomy,” mustn’t autonomy be a valuable trait that can be supported so that we increase the value?

Is autonomy perhaps even the most valuable aspect of the human: our characteristic when we are in our most rational state as rational animals. Perhaps autonomy is human essence?

From having been a comprehensible right, autonomy assumed the appearance of a super important value to constantly look for, like for a holy grail.

The question arose: Should we restrict people’s freedom to make own choices, if the choices threaten future autonomy?

We occasionally do disrespect people’s choices: for their sake. What I’m blogging about today is the tendency to replace “for their sake” with “for the sake of future autonomy.”

A new article in the Journal of Medicine and Philosophy deals with the question. You find the article by clicking the link below:

The article is written by Manne Sjöstrand, Stefan Eriksson, Niklas Juth and Gert Helgesson. They criticize the idea of a paternalistic policy to restrict people’s freedom in order to support their future autonomy.

The authors choose to argue from the opponent’s point of view. They thus start out from the interpretation of autonomy as super important value, and then try to show that such a policy becomes self-defeating. Future autonomy will be threatened by such a policy, much like the dictatorship of the proletariat never liberated humans but chained them to a totalitarian order.

The article is well-argued and should alert those enchanted by the word “autonomy” to the need of checking their claims.

Even though the article does not disenchant the concept of autonomy through the philosophical humor that I described in a previous post, I was struck by the tragicomedy of claiming that the ultimate reason why healthcare staff should not comply with a patient’s request for help to die is that… assisted death would destroy the patient’s autonomy.

Pär Segerdahl

Minding our language - the Ethics Blog

Biobank and registry-based research: our publications

At the Centre for Research Ethics and Bioethics in Uppsala, we have since the 1990s been studying the ethics of biobank and registry-based research.

If you are interested to see what we have done in this field, you can find a recently updated list of our publications by clicking the link below:

The compilation also contains abstracts of the publications.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Disciplined behavior and original sin

This is a follow-up on my earlier post, Questionable questionnaires. In the article that I blogged about, Kevin P. Weinfurt provided two cautions to empirical bioethicists who are using questionnaires. I summarize them:

  1. Egocentrism: the all-too-human self-centeredness of the bioethicist who spent years thinking about particular ethical issues in particular ways, and who designs questionnaires as if these issues basically were real in the same way also for patients, doctors, nurses, research participants, donors…
  2. Literal-mindedness: partly because scholars have disciplined their linguistic habits, they easily overlook the possibility that people do other things with their words than literally describe what they think (e.g., when asked how they consider their chance of benefit from an experimental therapy, they may express hope or loyalty with the care team).

Today I want to highlight this remark in the article:

  • “These cautions are not in themselves new types of methodological missteps, but rather two potential underlying causes of frequently encountered missteps.”

Egocentrism and literal-mindedness are sources of methodological missteps, not further missteps. They are “pernicious habits of mind that plague all of us who are trying to understand patients, physicians, research participants, and others.”

I found this remark interesting, because it puts the emphasis on the researcher as a living person rather than on researcher behavior.

Poor sample selection, invalid inferences and other missteps occur in the behavior of researchers. Methodological rules address missteps on the same behavioral level: do this rather than that, and you’ll enter the secure path of science.

The two cautions are different. They challenge us to work on our habits of mind, on our self-awareness. Merely adopting other behaviors as researchers, which methodology typically aims towards, will not be sufficient if we refuse to face the persistent sources of the missteps within us.

It is no coincidence that the cautions are derived from the work of two philosophers, William James and Ludwig Wittgenstein. Philosophy is a self-searching activity.

I take Weinfurt’s article to be saying that there is no methodologically secured path of science, and certainly not if methodology is understood only in terms of disciplining researcher behavior.

Good and honest scientific work needs to include also exercises of human self-awareness. For researchers will continue to exist as living persons, not only as disciplined performers of more or less correct behaviors.

In a sense, one might say that the two cautions are reminders of original sin.

Pär Segerdahl

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

Humorous and comical thinkers

In my philosophical reading experience it is striking that some thinkers crack really good jokes. They are humorous and I laugh with them. Others are comical in their unyielding seriousness: difficult not to make jokes of.

Humor is not exactly what you think of when you think of philosophy. Hardly anyone reads philosophy to get a good laugh, and neither do I. But when philosophizing, joking surprisingly often lies just around the corner.

Those unexpected jokes often pinpoint the really sensitive issues.

Philosophy approaches you with such extreme demands. Demands for absolute certainty; demands for complete universality: demands for vantage points so primordial that they don’t even belong to life, but “precede” all tying of shoelaces and other trivialities that people are busy doing without reflecting.

The need to joke arises under the pressure of these demands.

The contrast between the absolute demands and the life that you nonetheless live becomes comical. You can then either persist in making the demands even more rigorously, becoming a comical thinker, or you can become a humorous thinker who cracks jokes under the pressure of the demands – to return you to life.

In this spirit, Derrida made the following joke of the absolutely certain human vantage point that Descartes thought he found in his cogito ergo sum:

  • “I breathe therefore I am,” as such, does not produce any certainty. By contrast, “I think that I am breathing” is always certain and indubitable, even if I am mistaken. And therefore I can deduce “therefore I am” from “I think that I am breathing.”

“Even if I am mistaken”: even if I am dead. Derrida’s joke opens up Cartesian certainty to doubt. Absolute certainty about my human essence that is compatible with my no longer being alive: how can it be “what I am”!?

Wittgenstein said that he could imagine a serious and good philosophical work that consisted entirely of jokes. I could imagine such a work beginning with Derrida’s joke.

The need to think can be a need to joke!

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Questionable questionnaires

Questionnaires are increasingly frequent in bioethics. They can provide information about how ethical issues are real for the parties concerned: for patients, for families, for nurses, for physicians, for research participants, for donors…

Questionnaires can counteract professional isolationism where bioethicists believe they know exactly which issues should concern people, and on the basis of this “expertise” export ethical policies without importing impressions.

Unfortunately, isolationism isn’t that easily remedied. Kevin P. Weinfurt warns that questionnaires can conceal isolationism, if responses are interpreted by bioethicists who have other points of view and other linguistic habits than the respondents.

Interpretations are easily biased to speak to issues internal to the bioethical debate. You find Weinfurt’s warnings here:

How can ethicists’ points of view bias interpretations? By asking THEIR questions as if every human housed a bioethicist experiencing the same issues. Concerning clinical trials, for example, bioethicists estimate “chance of benefit from experimental therapy.” Thus, it is natural for them to query research participants how THEY consider their chance of benefit, as if participants too perceived the situation as a decision tree with chances of disease control and risks of death.

How can ethicists’ linguistic habits bias the answers? By being so thoroughly trained in a bookish scholarly culture that they interpret people literally. If a respondent answers the question,

  • “How confident are you that the experimental therapy will control your cancer?”

by encircling 80 %, they believe that the respondent DESCRIBES his private assessment of the probability. But communication does not consist only in describing inner mental states. People DO a great number of things with words, for example, they VOICE HOPE.

When a respondent who answered 80 % afterwards was interviewed about why other people would answer 10 %, he didn’t answer in terms of divergent prognostic factors, but said:

  • “Oh, man, I feel sorry for them… They’re just not…they’re just…they’re hopeless. They have no hope left. For some reason, they’ve been beat down so bad that they can’t think positive anymore… Maybe they don’t have the same kind of support in their life that I do.”

If Weinfurt’s warnings are right, assuming that patients’ hope of recovery causes unrealistic assessments of chance of benefit may be a misconception. Patients may not make such assessments at all. It is the questionnaire that causes the illusion.

They voice their hope, that’s all.

Pär Segerdahl

In dialogue with patients

What does responsibility mean within a widespread doping culture?

We tend to hold individual athletes responsible for doping behavior. This makes it tempting to assume that if we are to fight doping in sports, we need to more efficiently identify these individuals and impose sanctions on them.

But what if doping is a phenomenon with many ramifications? What if doping isn’t invented by individual athletes, but is a social reality where practices and attitudes are formed also by (and with) other actors, such as leaders, trainers, doctors, sponsors… and through the unreasonable expectations of the audience?

Ashkan Atry recently defended a thesis focusing on the social and cultural dimensions of doping. You find his thesis here:

Without denying that individual athletes have responsibility or that sanctions are needed, Atry questions whether it is responsible to primarily hold individual athletes responsible for doping behavior. He argues that we won’t change the current doping culture if we don’t broaden the scope of responsibility to include also individuals and groups other than the athletes themselves.

The thesis develops a broader and more prospective notion of responsibility, to allow us to identify responsibility more responsibly than we far too easily are tempted to do.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Overview of the regulatory framework of European biobanking

Unless you have an education in law, it is almost impossible to find your way through the regulatory landscape of European biobanking, or to understand the motives behind the proposed new general data protection regulation.

However, a helpful overview and discussion can be found in this article by Evert-Ben van Veen:

The article also contains some interesting thinking on a number of important issues, like the concept of personal data, the need for a third category of data between personal data and anonymous data, and the role of trust in institutions.

Pär Segerdahl

We recommend readings - the Ethics Blog

« Older posts