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

Month: October 2012

Commercial gene tests and incidental findings

I read Arthur Caplan’s criticism of the personalized gene tests that some companies insist we must buy to gain control over our future health. I could not help wondering if his criticism is applicable also to the idea that biobanks should inform research participants about incidental findings about their genes.

Caplan rejects the crystal ball view of genetic information that is utilized in the marketing for commercial gene tests: the image that genetic information is uniquely predictive about YOUR future health.

The crystal ball image is a prejudice. It is a gene myth that makes people believe they MUST get genetic information to control their future health. It is a myth that makes people think they have a RIGHT to look into the crystal ball, now that this uniquely powerful instrument is available.

But disease risk is the result of complex interactions between genes and environment, and “no one knows how a single person’s lifestyle, upbringing and environment interacts with their particular genes to create risks,” Caplan writes.

If this is true and genetic information in abstraction is far from predictive, then I cannot avoid worrying about how the crystal ball image shapes also the ethical discussion about incidental findings in genomic biobank research.

In this discussion, accidentally discovered individual genetic variation is sometimes described as a good that participants have a right to be informed about, in return for the biological material they donate to the biobank.

If Caplan is right and such information typically is not worth the money, how can it be a good that participants have a right to receive such information from the biobank in return for their sample?

Do well-meant ethical arguments sometimes resemble unethical marketing campaigns?

Pär Segerdahl

Approaching future issues - the Ethics Blog

Is there a need for a retractions database?

I wrote a while ago about drug companies as whistle blowers. Evidently, the pharmaceutical industry wastes more and more resources unsuccessfully trying to replicate published research studies.

The amount of irreproducible published research surprised me. If there is such a trend, questions accumulate. Are researchers becoming increasingly careless, or even fraudulent? Are researchers acting under too heavy pressure to publish positive results? Do many researchers lack sufficient skills in statistics?

Or has research in the life sciences entered such complex terrain that it has become virtually inhuman to survey all factors that may influence the results?

I’m not competent to answer these questions and welcome helpful comments.

A way to handle at least part of the problem has been suggested: set up a centralized retractions database. Such a resource would help scientists and the industry to exclude at least some of the most unsuitable candidates for replication.

An ambitious study of retractions used secondary sources when the journals’ own reasons for the retractions seemed incomplete or vague. According to this study, fraud or suspected fraud caused 43% of the retractions. Duplication accounted for 14% of the retractions, and plagiarism for 10%; only 21% of the retractions had to do with error.

If you want to read more about the study on retractions, it is summarized in this recent Nature News article.

Pär Segerdahl

Following the news - the ethics blog

Project Nim: a tragedy that was interpreted as science?

Last week I wrote about the significance of negative results in science. This week I saw one of the saddest documentaries I’ve ever seen, featuring the tragic context of an often cited negative result in science.

The documentary, Project Nim (2011), was about the psychologist Herb Terrace’s attempt in the 1970:s to teach American sign language to a young chimpanzee, in a specially designed classroom at Columbia University in New York City. “Specially designed” here meant bare and small in order to avoid suggesting activities that are more exciting for a young ape than reproducing the teacher’s hand movements.

Terrace’s personal stance to the language project struck me as odd. Scientifically, he wanted to test the hypothesis that an ape can be taught to construct sentences. This would disprove Chomsky’s view that language is an innate and uniquely human trait. From a more “personal” point of view, what excited Terrace most was the prospect of experiencing a nonhuman animal communicate ape thoughts.

It would be like meeting an alien from outer space who miraculously communicated foreign thoughts to humankind. Treating young Nim as such an alien research subject strikes me opposed to the very idea of human language and communication.

The whole project was a mess, ill-planned and dysfunctional from the start. And yet there were happy moments where good relationships developed between Nim and responsible caretakers/teachers/surrogate parents outside the classroom.

In these more “distractive” real-life situations, where the point wasn’t about reproducing the teacher’s signs but about doing meaningful things together and communicating about them while doing them, it seemed Nim used signs to talk. The caretakers were optimistic, as was Terrace.

However, as Nim got bigger and stronger and approached adolescence, new problems appeared. He began to attack and bite his teachers, and Terrace feared being sued. These troublesome behaviors developed more rapidly than Nim’s signing abilities, and Terrace was worried.

One day, Terrace called his staff to a meeting and declared that the project was over. They had collected suffient data, and Nim could be sent back to the primate research center in Oklahoma where he was born.

The rest of Nim’s life was was awful, terrifying (although responsible caretakers did try to make a difference).

Simultaneously, Terrace started reporting the project; in a book as well as in an article published in Science. He sat down, watched videotaped interactions between Nim and his teachers, and came to the conclusion that Nim had not acquired the ability to use signs linguistically in genuine communication with humans. He was merely mirroring the teacher’s signs (or begging for things).

The negative result that Terrace published perhaps received more attention than any other scientifically published negative result. In spite of the fact that the project was dysfunctional from the start, Terrace’s publications were welcomed as presenting hard scientific evidence that apes cannot learn to communicate in language.

I’m not so sure what conclusions can be drawn from a research project that could just as well be described as a dysfunctional family history ending in tragedy. Moreover, as Peter Singer observed when he watched the documentary, Terrace could hardly end the project and send Nim away without reporting negative results.

Can we trust Terrace’s judgment when we watched the videotapes and decided that the ape he sent away did not speak with the fellow humans with whom he interacted?

Anyway, the book that Terrace wrote, Nim: a Chimpanzee Who Learned Sign Language (1979), is fascinating and well worth reading. It contains vivid descriptions of Nim’s life with humans; recollections that often seem to contradict the conclusions that Terrace finally reached.

Pär Segerdahl

Understanding enculturated apes - the ethics blog

Drug companies as whistleblowers

Some years ago, John Ioannidis warned that most published research findings probably are false.

More recently, the drug companies Bayer and Amgen reported that their attempts to replicate scientifically published studies that could be a basis for new drug development most often fail. Amgen, for example, failed to replicate 47 of 53 oncology and hematology results that they initially deemed interesting for their purposes.

We are used to seeing drug companies under attack by right-minded critics. Now they are in the position of delivering the critique. They invalidate most scientifically published findings in the field of medicine. By going public about this embarrassing fact, they act as whistleblowers revealing emptiness in current scientific practices and ways of supporting and awarding high quality research.

A solution to the problem is now being proposed, though not by the research community, but by a company: Science Exchange. They offer researchers a new service. For a fee, they attempt to reproduce the researchers’ studies. If the studies can be successfully replicated, the company issues a certificate of reproducibility.

Can such a proposal contribute to a transformation of current scientific practices, towards an order where peers not merely read and assess papers, but practically try to validate results?

But shouldn’t validation be internal to the research work, rather than outsourced?

If I interpret Karl Popper right, a scientist should actively try to achieve negative results. Only by failing to produce negative results can she tentatively claim positive results.

Do current ways of measuring and awarding scientific quality undermine the self-critical spirit of scientific work?

Pär Segerdahl

Following the news - the ethics blog