By Linda Nordling in Science: “San people of Africa draft code of ethics for researchers”:
The code, published here on 3 March, asks researchers to treat the San respectfully and refrain from publishing information that could be viewed as insulting. Because such sensitivities may not be clear to researchers, the code asks that scientists let communities read and comment on findings before they are published. It also asks that researchers keep their promises and give something back to the community in return for its cooperation.
The article points specifically to a 2010 study of San genome data by Stephan Schuster and colleagues, published in Nature, as one that posed many problems in the view of many San people.
The research guidelines are available freely as an online booklet: “San Code of Research Ethics”. The preamble expresses the rationale for the code and some of the problems experienced with prior researchers.
We have encountered lack of respect in many instances in the past. In Genomics research, our leaders were avoided, and respect was not shown to them. Researchers took photographs of individuals in their homes, of breastfeeding mothers, or of underage children, whilst ignoring our social customs and norms. Bribes or other advantages were offered.
Failure by researchers to meet their promises to provide feedback is an example of disrespect which is encountered frequently.
This should be widely read and discussed by anthropologists and students.
It is noteworthy that the code singles out genomic research. Nordling’s article includes a quote from David Reich, who worries that complying with such a research code would prevent independent researchers from carrying out reanalysis or replication. The standard of data availability in human genetics as carried out in the U.S., Europe, China and Japan allows de-identified sequence data to be distributed freely online without restriction. If future samples are provided only under this code, it’s clear that such redistribution would not be permitted.
People have a right to decide they don’t want their genetic data freely available on the Internet, and to decide if want to participate in only one study and not any subsequent work. I do hesitate to accept that leaders of a group have “rights” to prevent group members from participating freely in research if they should choose to do so. At that level, I favor individual rights over any idea of cultural group rights. But cases where individuals are sought as research subjects precisely because they are members of some group are in my view on shaky ethical ground if they are pursuing aims that representatives of the group find damaging, unethical, or exploitative.
And there is no question that anthropological researchers have exploited San peoples. Many anthropologists who carried out research in the 1960s and 1970s have told me about the kind of practices that were acceptable in those days. It is not enough to say that times and standards have changed. Today’s anthropological and genomic researchers need to build trust and value into the relationships they have with their study communities.
Most of today’s researchers are very ethical. But in genomics it is unfortunately common for samples to be taken and examined by bioinformaticians who were not involved in sample collection and do not know any members of the study community. Research teams need to do a better job of educating people at all levels of their project about the histories of research and the current needs of study communities. A research ethics statement like this one helps to clarify the expectations, but it is up to the scientific community to demand better and to follow through.
A postscript: It is very unfortunate that the story begins with the line,
The San people of Southern Africa are among the closest living relatives of our hunting and gathering ancestors.
This is not true. All living humans everywhere in the world share a common heritage in hunting and gathering populations living before 200,000 years ago. We are all equally descendants of these ancestors, although the fractions of different groups of people living at that time, including some sub-Saharan African populations and Neandertals and Denisovans, vary among living peoples.
The various groups that are today known as San peoples, including the ‡Khomani San, Ju|’hoansi, !Kung, and others, comprise a lineage that emerged early within the differentiation of modern humans within Africa. They have their own long legacy, marked by many genetic variations that are rare or missing from other populations in the world. It is this contribution to human diversity that makes San peoples of great research interest for human geneticists, not the mistaken idea that they are closer to our common ancestors.