The Ethics Blog

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

Category: In the research debate (Page 31 of 37)

Some considerations on the creation of artificial life (by Mirko Ancillotti)

15 January, 2014 / / 0 Comments

mirko-ethicsblogIt is hard to understand and explain why new biotechnologies often are so upsetting. I am inclined to think that many people accord a special value to nature and to what is considered natural. This stance is held in spite of the fact that human beings have purposively modified nature, e.g., through the selection of plants, since they started with agriculture and breeding about 10,000 years ago. It should be admitted that these interferences have highly improved their (our) quality of life. Biotechnologies alter what is naturally occurring and these changes are felt as being particularly dangerous for human beings (directly or through fatal modifications of the environment). In my opinion, what is natural is morally neutral and it would be paradoxical to assume “naturalness” as a guiding principle.

The paper of Douglas, Powell, and Savulescu investigates whether the creation of synthetic life is morally significant and concludes that it is not. As mentioned in the original post, they consider three attempts to establish the moral significance of creating artificial life. I would like to focus on the third attempt, the one claiming uncertainty about the ontological and moral status of synthetic products because of their uncertain functional status.

The ontological status of synthetic products is regarded as being problematic because these products don’t clearly fit the organism-artifact dichotomy. The worry about ontological status is understood by the authors as a worry about functional status. According to the etiological account of functions, those expressed by an organism are the result of evolution and it can be thought that a living entity has an interest in expressing its functions, and be alive.

In what the authors call “Moral Prudentialism,” the moral status of an organism depends on interests and interests depend on functions. An artificial organism may have interests in remaining well-functioning, but what is problematic and gives rise to functional uncertainty is that its functions are not the result of evolution. Instead, they have been purposively designed and built into it by an external rational agent (an artificial organism’s function satisfy human purposes).

I agree with the authors in rejecting the attempt to give moral significance to the creation of artificial life on account of functional (and ontological) uncertainty. The moral assessment of an entity should be based on what the entity actually is and expresses. The etiological account of functions seems to be a poor help in assessing individuals, but I think that it should still be taken into account. Indeed, there is to consider the fact that synthetic organisms have not developed through natural or slightly modified (by humans) selection in an evolutionary equilibrium with other species and ecosystems (naturally occurring organisms are not necessary in harmonious equilibrium, but they are typically at least tolerated without provoking an ecological havoc).

If their genealogy is not considered a central factor in assessing their value or significance, it is nevertheless worth noting that, given the extreme potentialities of synthetic biology to give rise to forms of life completely different from existing ones (possibilities that are much more prominent than in genetic engineering), it seems reasonable to investigate the moral significance of creating artificial life by looking at the whole picture and not at the individual capacities of an organism considered in isolation.

Mirko Ancillotti (MA, Philosophy, CRB)

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

11 December, 2013 / / 0 Comments

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

Beware of the vanity of “autonomy”

26 November, 2013 / / 0 Comments

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

19 November, 2013 / / 0 Comments

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

13 November, 2013 / / 0 Comments

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

Questionable questionnaires

30 October, 2013 / / 0 Comments

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?

23 October, 2013 / / 0 Comments

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

16 October, 2013 / / 0 Comments

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

Idling biobank policy?

9 October, 2013 / / 0 Comments

If you allow researchers to do brain imaging on you for some research purpose, and they incidentally discover a tumor, or a blood vessel with thin walls, you probably want them to inform you about this finding. There are no doubts about the finding; the risks are well-known; it is actionable.

Suppose instead that you donate a blood sample to a biobank. Suppose that researchers studying the sample discover a genetic variant that, depending on a number of interacting factors, might result in disease in three years’ time, or in thirty years, or not at all. It is difficult to predict! Do you still want to know?

How should these incidental findings be handled that increasingly often will be made in genetic biobank research? We are all different, so finding variants with some statistical relation to disease is more or less expected.

A common approach to this question within attempts to develop a policy for incidental biobank findings is to formulate general conditions for when researchers should inform participants. Like: if the finding is analytically valid; if it has clinical significance; if it is actionable – then participants should be informed.

The problem is: we already knew that. We know what these conditions mean in imaging studies when a tumor or a damaged blood vessel is discovered. In these cases, the conditions can be assessed and they make it reasonable to inform. But what about genetic risk information, which often is more multidimensional and has unclear predictive value?

This question is discussed in a recent article in the European Journal of Human Genetics, written by Jennifer Viberg together with Mats G. Hansson, Sophie Langenskiöld, and me:

Viberg argues when we enter this new and more complex domain, we cannot rely on analogies to what is already known in a simpler domain. Nor can we rely on surveys of participants’ preferences, if these surveys employ the same analogies and describe the findings in terms of the same general conditions.

Time is not yet ripe for a policy for incidental genetic findings, Viberg and colleagues conclude. Formulating a policy through analogies to what is already known is to cover up what we do not know. The issue requires a different form of elucidation.

That form of elucidation remains to be developed.

Pär Segerdahl

We participate in debates - the Ethics Blog

Dynamic consent in biobank research: better than broad consent?

2 October, 2013 / / 0 Comments

Biobanks make contributing to medical research easy: easier than when the research is performed on living human bodies.

I simply donate my sample and consent to storage for certain kinds of future research, under specified conditions like that the research is ethically reviewed and the sample is coded so that it cannot be traced to me without keys. I consent to a specific biobank framework.

Thereafter, the research is done on the sample and data in registers. What an easy way of contributing to research!

Too easy, it is sometimes objected. Broad consent to future research implies ethically problematic passivity among biobank participants, the objection goes. Participants are precluded from exercising fundamental rights and freedoms. Power is transferred from participants to researchers.

What’s the solution, then? An often proposed solution is familiar to all who make choices on the internet. Passive biobank participants can be activated by keeping themselves updated via a website. On this website, they give dynamic consent in real time, as researchers continually inform about proposed research with donated samples.

Dynamic consent would empower biobank participants, make them engaged in the decision-making process and equal partners in the research.

It sounds brilliant! What an easy solution!  In the case of large population-based biobanks, however, it would mean that hundreds of thousands would spend the rest of their lives keeping themselves updated about planned research with samples donated perhaps decades ago, and for each new project make active choices: yes or no?

Researchers would be free to come and leave the biobank, while participants are fettered to a life-long commission as ethical gate-keepers, with their own login information.

Seduced by sugary phrases? In an article last month – Broad versus dynamic consent in biobank research – Norwegian research ethicists identify six often cited reasons in favor of a dynamic consent model for biobanks. For each cited claim, they are able to adduce reminders and considerations that make the claim notably less appetizing, at least to me.

This post would become long-winded if I informed about all objections to the claims in favor of dynamic consent: who reads long texts on the internet? Two central objections, however, are that a dynamic consent model would invite people into the therapeutic misconception and that it would individualize the ethical review of public health research.

Still, it is vital that biobanks continually inform about ongoing and planned biobank activities, making the research transparent, and giving those who might want to opt-out opportunity to do so.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

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