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

Month: February 2012

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