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.