Ethics violations in Danish study of Indonesian divers

A few months ago the Danish star researcher Eske Willerslev reported on the genetic basis for the ability of the Indonesian Bajau divers’ ability to spend a long time under water. It turns out that they have a particular genetic variant that causes them to have an enlarged spleen that can store oxygen for long periods of time. 

Last month Science reported that Professor Willerslev has been accused of conducting this research in an unethical manner by the head of a genetics institute in Jakarta, professor Herawati Sudoyo.  First, the project was not reviewed by an appropriate research ethics committee in Indonesia. Second, it only included one Indonesian as a collaborator, who is not even a specialist in the area of the research. Third, the appropriate permissions to take the samples out of Indonesia were not obtained. Professor Willerslev does not dispute any of these facts, but has pointed out that he did have a permit from the Ministry of Research and Technology (RISTEK) and that he was under the impression that this also includes an ethics approval. Both Willerslev, and the lead author of the paper, Melissa Ilardo, emphasize that they would never knowingly do anything unethical, and in fact had done everything they could to conduct this research in an ethical manner. They simply were not aware of the issues raised in the criticism, it seems.

That, of course, may very well be true, but the question is whether they should have known what the Indonesian requirements were. Most ethical misconduct does not occur by willful neglect, but by gross negligence. The question is therefore: Did professor Willerslev’s team do what one could reasonably expect them to do, to identify the ethical requirements for the type of research they planned in Indonesia?  There are several reasons why this is doubtful.

First, professor Willerslev is not exactly an inexperienced researcher but has conducted numerous studies earlier in foreign countries, and should be well aware of the complexity of regulations governing in particular genetics research. He encountered the same issues when he did genetics research in among indigenous populations in Australia and the US previously, and had to apologize then for not being aware of all the ethical issues involved. One can make an excuse once for not knowing what the regulations are, but this is at least the third time this excuse is used.  

Second, even a cursory examination of what is involved in getting a research permit from the Indonesian Ministry of Research and Technology makes it clear that this is simply a permission for a foreigner to enter the country in order to do research. It mainly involves visa related issues, in the same way as other groups, such as journalists or business people, have to fulfill certain requirements to get the appropriate visa. It specifically states that it does not provide a permission to ship samples out of the country.

Third, researchers who interact with human beings for research purposes (in this case taking spit samples and measuring spleens and therefore physically interacting with research subjects) should know that such research in most countries requires separate ethics committee approval by an in-country ethics review committee. This requirement has been in force for decades. Genetics researchers should also be aware that there in most countries are specific, additional rules governing the handling of samples that contain genetic information, and if special population groups are involved, additional restrictions apply. There is simply no basis for claiming a lack of knowledge by an experienced researcher such as professor Willerslev.

Fourth, there is the issue of involving local researchers. This is not a general legal or regulatory requirement, but it certainly has received a lot of attention in the ethics literature over the past couple of decades. It is by now well established that if a researcher from a high-income country does research in low- or middle-income countries they need to include local collaborators. In this case they included a person with no expertise in the subject area of the paper, but a person who has published on teacher evaluations. In the note on what the authors have contributed, this author is said to have “provided logistical support in Indonesia”. This is typically not enough to be listed as an author of a scientific paper, and is also an odd departure from normal practice. In this case it is particularly important. Had the researchers followed normal procedure, of having a responsible academic unit in Indonesia involved in the planning of the research, they would likely have avoided the embarrassment of not adhering to well-established rules for research conduct in the country.

The research procedures were approved by the Developing-Country Committee of the Danish National Committee on Health Research Ethics. One of the authors is associated with the Wellcome Trust, an organization that has, at least in its official statements, made a point of requiring high ethical standards in their funded research in low- and middle-income countries. One would hope that these two groups can take the necessary steps to ensure that their associated researchers do not commit such obvious ethics lapses in the future. The additional interesting question is: If it is established that the research team did not follow established rules for the ethical conduct of research, and it is accepted that they should have known about these rules, should this paper be retracted? Or at a minimum, should the journal post a note and apology about the ethics lapses? Given the high profiles of this research team and the journal it is unlikely to happen. The sad experience is that journal editors still do not take ethics seriously.