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

Author: Pär Segerdahl (Page 42 of 44)

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

Personalized medicine against the diabetes epidemic?

When promising technologies see the light, it can be difficult to make sound predictions about their future utility.

Technical breakthroughs that promise to transform society tend to bewitch the mind. Their tremendous potential begs for interpretation by more dreamlike imaginary powers.

When nuclear power was young, for example, the impact this new technology promised to have on society was interpreted by some in the futuristic imagery of nuclear reactors in every car, in every house, and in every kitchen range.

For a short while, every human energy problem seemed to have a nuclear solution.

Today, new gene sequencing technology is beginning to transform how we think about medicine. Personalized medicine is just around the corner. It promises to adapt both prevention and treatment of disease to the individual’s genome.

– How far can this promising new form of medicine be taken?

Two investigators from Albert Einstein College of Medicine recently suggested personalized medicine as a solution to the obesity and diabetes epidemic in the US and other parts of the world… where eating habits call for alarm.

The authors’ argue that costly prevention efforts could be targeted at those individuals whose genomes make them most likely to benefit. Such a personalized approach to the diabetes epidemic is suggested not only for the US, but also for developing countries where diabetes is spreading rapidly and public health resources are scarce.

I’m certain that personalized medicine will be very useful both in prevention and treatment of diabetes. But is it reasonable as a solution to the diabetes epidemic?

I may be wrong. But I cannot avoid seeing the suggestion as an attempt to “find a personalized medicine solution to every human health problem.”

Instead of targeting high risk individuals, and doing so generation after generation while we continue to expose them to the same dangerous eating habits that low-risk individuals adopt (and are enticed to adopt), why not consider efforts (like those of Jamie Oliver) to change globally spreading eating habits?

I admit that my judgment may be wrong and that I fail to understand the potential in this particular case.

What is the answer to the obesity and diabetes epidemic? Revolutionary medicine or a food revolution?

Pär Segerdahl

We like challenging questions - the ethics blog

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

The Swedish government announced new rules for research registers

Will new Swedish rules for research registers enable LifeGene to continue?

In December 2011, the Swedish Data Inspection Board (DI) decided that the large biobank investment LifeGene is against the law.

In its motivation, DI focused on the purpose of the data collection and the information to participants about this purpose. According to DI, LifeGene’s purpose – “future research” – is too unspecific to be in accordance with the Personal Data Act.

Yesterday (February 28), the Swedish government announced new rules for research registers. These rules are supposed to enable LifeGene to continue. If you read Swedish, you might want to study the government’s press release.

I am not a legal expert, but it seems to me that even if the government’s new rules can make LifeGene lawful as a research register, other laws become relevant when the register is being used in research… for example, the Personal Data Act, surveyed by DI.

I happen to believe that LifeGene’s purpose can be interpreted as being sufficiently specific even for the demands of the Personal Data Act. LifeGene does not bluntly state “future research” as its purpose, but specifies the kind of diseases that will be studied, as well as the goal of creating new tools to prevent, diagnose, and treat these diseases.

Karolinska Institutet (that administers LifeGene) has appealed against DI’s decision to stop LifeGene. If DI does not withdraw its decision, my uncertain layman guess is that the result of this legal process might still be relevant for the possibility of continuing LifeGene as planned.

Pär Segerdahl

Following the news - the ethics blog

Researchers’ opinions about communication of results of biobank research

One of the ethical difficulties that confront biobank and genomics research concerns the communication of results to participants.

Should biobank participants be given feedback from research? If so, under what conditions?

A recent article in the European Journal of Human Genetics reports a survey of Dutch biobank researchers’ opinions on the issue.

Here are some findings that struck me:

  1. Most of the respondents held the view that participants have to be informed about findings that are relevant at a group level.
  2. There was less agreement, however, about communication of findings that can be relevant for specific individual participants.
  3. About half of the Dutch biobank investigators found it acceptable to not communicate individual results about genetic variation.
  4. Most of the researchers (74%) answered that participants have to be informed about individual results only if there are implications for treatment or prevention.
  5. The respondents generally agreed that participants should not be informed about individual results in return for their contribution. If results are communicated, then, it is not because participation merits rights to individual feedback.
  6. Some worries among respondents concerning communication of individual results were: personal privacy will be harmed (36%); a therapeutic relation will arise (46%); participants’ insurance premiums might increase (66%); information about individual gene variation can frighten participants (81%).

What I find even more interesting, perhaps, is that the researchers’ opinions (in this study) differ from those of the general public and patients (in a comparable study).

When asked similar questions, the general public and patients want individual feedback regardless of the possibility of prevention or treatment… although they seem to change their minds after they have been recruited by biobanks as participants.

As participants, they are less interested in individual feedback than before recruitment.

This change of opinion among participants in the direction of the researchers’ opinions is fascinating. I cannot resist speculating about its cause. Is there such a thing as a “shared experience” of biobanking that shapes expectations and evaluations?

Nevertheless, according to the authors, the gap between the groups is sufficiently wide to complicate the question of how to communicate results to participants.

Pär Segerdahl

ethics needs empirical input - 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

Blood samples to be destroyed in Minnesota

Privacy concerns and public health endeavours sometimes clash with each other.

A recent example comes from the state of Minnesota.  After a ruling from the state’s supreme court, one has begun to destroy blood samples taken routinely from newborns in  a screening program. The practice is seen as a violation of privacy, since consent was not obtained first.

Read more in Science, News of the Week.

Pär Segerdahl

Henrietta Lacks and the power of rhetoric

Paradoxically, the victim can have the most powerful position, namely, as a “rhetorical figure.”

I sense this rhetorical power in Rebecca Skloot’s bestselling book, The Immortal Life of Henrietta Lacks. I think less freely under the spell of this rhetoric. My thoughts are not allowed to discover new aspects of things. Questions are being silenced and the direction of my “reasoning” is predestined.

Who dares to be scrutinizing in the confrontation with the tear-jerking language that occurs on the author’s website for the book? This could be the lyrics of a whole genre of sad songs.

We read and write about Henrietta Lacks as if we were spellbound.

The most spellbound of all seem to be the reviewers of the book. Many excel in morbid presentations of a both dead and living body abducted by science; of a poor black woman who anonymously “paid the price” for a whole series of profitable medical discoveries and innovations.

Who wouldn’t yield to the temptation?

As a result, however, obvious questions are silenced. For example: Is it not wonderful that she was anonymous (until the publication of the bestseller)? Is it not splendid that scientists speak of “HeLa cells” and not about “Henrietta Lacks’ cells”? Wasn’t her integrity protected that way (until the publication of the bestseller)?

We don’t know how Henrietta Lacks would have described her destiny. Would she describe herself as a victim of science (rather than as a victim of cancer, for example)? Or has she become one of the most recent victims of the enchanting rhetoric of the victim?

(I wish to thank Joanna Forsberg for inspiration. A comment of hers on our Swedish Etikbloggen helped break the spell for me and gave birth to this post.)

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Australians want to biobank

Creating biobanks for future research is sometimes debated as if such investments seriously threatened sample donors’ integrity.

In Sweden, the Data Inspection Board even decided that it is against the law to collect biological samples and personal health data “for future research.” Participants cannot give their consent to anything that vague, they argued.

This distrustfulness may be out of touch with public perceptions, however, judging from a recent Australian study. The Australian researchers report “a high level of trust in university biobanks” and “a strong willingness to participate in biobank research.”

Don’t people know one cannot trust anything that vague?

Pär Segerdahl

We like challenging findings - The ethics blog

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