The Human Genome Diversity Project (HGDP) is commonly thought to have been “stopped” by the actions of “indigenous peoples” who were not interested in being memorialized in laboratories. This concern about memorialization is not hyperbole since many of the investigators involved—who almost never were from any of the targeted groups—were clear that they wanted the DNA from indigenous populations that were “disappearing” (as well as others). The representatives of the targeted bioethnic entities wanted to know why the investigators were not helping them survive instead of worrying about generating hypotheses and constructing narratives based on their DNA. They were also concerned about the interpretation and misuse of these data, and its commercialization. Native Americans and certain indigenous groups in Asia were the most vocal in their opposition. Africans were nearly deafeningly silent. The HGDP was not stopped, only stalled, and in the case of Africa it is not clear that it was even stalled, based on the number of publications on African populations.
Some scientists were apparently taken aback or shocked that anyone should question them. A limited review of various sources indicates that at least some scientists were determined to carry out this project no matter what anyone said, with the implication that they had some kind of right to this information and to somehow lay claim to be representing all humankind in a quest for knowledge. There was, and has been, no discussion of the ethics of curiosity, nor of the ranking of ethical responsibilities to other communities, if we count scientists as a community apart. Science and scientists exist in social, political and historical contexts. The claim that there were no potential financial motivations for the HGDP’s DNA collection does not hold water; there have been numerous attempts at gene patenting, and there are other examples of the exploitation of biological materials without any rewards going to the donors or their families. The best example is the well known HeLa cell line: used nearly sixty years in countless laboratories, by thousands of researchers, generating money in a myriad number of ways. The HeLa cell line came from Mrs. Henrietta Lacks, of Middle Passage African descent, who died in 1951 in Baltimore, Maryland. Her family has not benefitted economically or socially from the cell line and indeed do not have adequate healthcare at this time. This is a true irony.
Not all compensation is in salaries; some is in obtaining degrees, fame, prizes, and claims of original knowledge creation or exploration. The so-called Tuskegee study, better called the US Public Health Service study in Tuskegee, was couched in terms of gathering data for “science”; tragically some Middle Passage Descendant Americans even bought into this construct. Curiosity in the context of unequal power relationships has many rewards for those who are allowed to act on it, but is highly questionable.
One can demonstrate the persistence of problematic models, practices, terms, constructs, and differential control over research and discourse. The caption under Archbishop Tutu’s photo in an article in Nature mentioning his participation in a genome study might be said to illustrate this. It reads: “Archbishop Desmond Tutu’s genome was chosen to represent the Bantu peoples of southern Africa.” Whose voice is this in the caption? ‘Was chosen’ by whom: his clan elders, the Swazi king, the Zulu king, a committee of Bantu speakers officially elected for this purpose, the ANC, the African Union? Could his DNA actually represent all Bantu speakers—in what model of science? Archbishop Tutu’s name is not on the paper that presents him as a “representative” of “the Bantu”, a dubious taxon and connotation in a country where ‘Bantu’ was a descriptor on identity cards and viewed as a negative. Did Archbishop Tutu accept being called “Bantu Desmond Tutu” in the apartheid era, which has not really ended in all domains of socioeconomic life? No. But ironically he is now reduced to Bantu Desmond Tutu in a genome database. Notably, there are no “Bantu” names in the authorship of the paper—nearly twenty years after the “fall” of apartheid.
There are many other questions. Was Archbishop Tutu clear on the issues related to a lack of African representation in the ranks of geneticists and ethicists as well as the lingering problems with racial thinking in the taxonomy of African peoples and in scientific work? From bioethical and political perspectives was his consent truly informed? Did he understand that the completion of “Khoisan” and “Bantu” genomes in some sense fits the racist Carleton Coon’s misconception of human variation as race? How does Tutu’s DNA sequence advance the freedom of Africans in the townships of South Africa or the Gabonese rainforest from fear, want and need? It cannot be shown that Western DNA research will fix their current public health needs, or add to a sense of self-determination which is compromised in a global system of research which objectifies them. The freedom fighters who gave their lives in the anti-colonial struggles from Algeria to Zimbabwe were fighting against all forms of domination.
It is not clear if there was a strong statement from the Organization of African Unity (OAU) or its successor the African Union (AU) about the taking of biological materials from African peoples (from Cairo to the Cape). Some countries most certainly do/did in theory have some restrictions on research, but genetics may have been overlooked. The EU has stronger guidelines about various research issues. The AU officials, apparently, did not develop an oversight commission on the question of the rights of Africans with regards to their full patrimony: biological, geological, cultural, and other materials (including fossils). Nor did the OAU/AU fully address the issue of the full content of foreign aid, which should include the building of the capacity for African peoples, nations, and universities to “fish” for and develop the treasure of Africa which includes the data from its people, flora and fauna, and reap the full benefits, which include any economic and downstream scientific derivatives, degrees, fame, and others. Much has been taken from Africa with inadequate or no compensation over the last 500 years; the accumulation of money and wealth by the West, measured in this case by genetic data, continues apace.
A word on one diasporic group is in order. Within the USA, none of the major community or rights organizations of Middle Passage Descendant (MPD) Americans made official statements about the harvesting of DNA from this population. The demands for opportunities to redress past injustices did not include one for funds to build community institutional capacity in human sciences which have a history of spawning ideologies used against minorities. While there has been some voiced concern about increasing “minority” participation by the training of individuals, it does not seem that there has been as much concern for developing the capacity of under-represented institutions as institutions. There is/was no public and absolute push for the development of capacity for genetics research and global participation within institutions that have traditionally served the MPD community. It is not known to what degree the leadership of these institutions demanded inclusion, a notion of distributive justice covers this matter. The trans-generational impacts of colonialism and racism will not be solved by a little “inclusion.” It can be argued that it is a human right to be able to study one’s community, especially in the cases where past practices have been laden with theoretical and other abuses.
A range of ethical issues were and can be raised about the HGDP, with major focus being placed on informed consent—a tricky issue since it has multiple components and dimensions. Obtaining consent for the act of drawing blood must be distinguished from consent for the purpose to which that blood will be used, and there are other things as well. The attestations of informed consent in Africa are not convincing as to whether there was full understanding on the part of the “participants”, “subjects” or “objects” as to the range of purposes of that DNA. We must never forget that a culturally relevant consent informed by an explanation rooted in Geertz’s concept of “thick description” is the only kind of consent that would be morally (and politically) acceptable. Vanessa Gamble’s call for a critical race bioethics is relevant here. It must also be remembered that consent given for blood drawing and cheek swabbing in situations of asymmetrical power relationships is ethically problematic when not simply wrong. Not only must individuals and communities not be misled, but the context must not be coercive, deceptive, or threatening.
In ethical terms the concept of autonomy, or as is now said respect for autonomy, covers these situations, and it could be asserted that these must be related to self determination at the level of nations, communities, and micronations, to borrow a term from Wangari Maathai. Respect for autonomy means respect for self determination. True autonomy implies real understanding and control over the circumstances of consent. At the community level the issue is one of self determination: does a community understand to what uses the DNA will be put, and who would gain in the short or long terms the most benefit? There is a justice issue here as well in terms of bioethics. Naive utilitarianism can have no role since there was no obvious benefit to all (the human community, the local community) at the time that most of these samples were collected and even now as we write. Large sums of money are being spent essentially in the name of curiosity. Does the burden of proof of morality lie with the educated financiers or those who are requested to be subjects/participants? The hope of future rewards when peoples are on the verge of starvation, infant mortality is high, and cultures are being destroyed is a hollow promise that deserves a comment from the keepers of virtues and morality in the “developed” world. The bioethics concepts of beneficience and non-maleficence are useful guides to right action in these issues. They are little mentioned in studies which discuss the genetics of African peoples.
Some other ethical issues are rarely reviewed. For example, little has been written about the ethics of curiosity with reference to genomic, genetic and other human biological studies in Africa. Sandar Sarukkai points out that much of science “is often seen to be independent of ethics,” and suggests that curiosity as a concept has been used by scientists to keep ethics “at bay.” The argument is that science is about “facts,” “transcendental truths,” and that ethics is about values which emanate from the human experience. From this point of view only “applied science” is subject to ethical considerations, because basic science— in its purest sense—is presented as an attempt to simply discover truths, no matter the consequences. Sarukkai suggests that curiosity itself is value laden and culturally mediated, and that scientists must consider constraining curiosity itself, not just avoid working on projects regarded by many as currently unjust or unpopular. He states that scientists seem unwilling to take this step, citing literature from the past decade in which the idea of constraining curiosity is clearly rejected.
A more fundamental question is in order. Where do the rights to be curious and act on curiosity originate? What about the boundaries of curiosity? Does one have a right to be curious, and to act on that curiosity about anything, especially in the context of recent global history? “Who has the right to interrogate— whether it is other humans or nature?” Some researchers apparently believe that it is their right to have unbridled curiosity (and act on it) when it comes to certain domains in exploratory (versus clearly experimental) science. According to Sarukkai scientists resist “constraining their curiosity per se.” This position ignores the contexts of history, privilege and power. What gives any one the right to obtain, analyze and interpret Kalenjin DNA, and what would those Nandi soldiers who forced the British to negotiate have to say about this (or King Hassan V, Nelson Mandela, Gamal Nasser, Jomo Kenyatta or Patrice Lumumba for that matter)? Any notion that there is an automatic right to roam the Sahara, the Congolese rain forest, the Atlas mountains, Nile Valley and basin, or the east African savanna in search of DNA founders on a polluted reef. The pollution involves, but is not limited to, the denial of patrimonial rights in the context of recent history, arrogance, vulgar power and scientific racism in the neocolonial context.
Identity bears a basic relationship to patrimony, and it is fair to say that much of the work on the genetics of non- Western peoples has not been concerned with the issue of patrimony and the autonomy or respect for autonomy of those peoples. Little has been written about sharing the technology and knowledge so that research can be done by insiders. Less has been done to actually help create the necessary infrastructures. It is also likely that Africans have not vociferously demanded this, which could also be viewed as an ethical and political lapse. Who has first rights to collect the data and study the human biology of Africa for any reason?
Western scientists often seem to speak as a class with ascribed privilege and the right to study anyone they want, thus continuing an obvious tradition from the colonial period, itself perhaps the result a change in the value placed on curiosity—and the right to explore coupled with a right to conquer. The irony is that much of the wealth (invested over and over) that allows so much science to be done has its roots in the exploitation of colonies and free slave labor. Edmund Pellegrino, formally head of the Presidential Commission for the Study of Bioethical Issues, advocates for ethics and virtue, and urges physicians to seek and practice a virtues-based ethics, i.e. to be virtuous. The patient is not to be an anonymous deracinated object of analysis, under the care of an instrument wielding analyst called a doctor. Ancient non-Western, specifically Egyptian conceptions of Maat are also helpful in this regard. Karenga notes this declaration of Kheti:
I have done what people love and divinities praise.
I gave bread to the hungry, clothes to the naked.
I listened to the appeal of the widow.
I gave a home to the orphan.
I turned my back on the lover of lies.
And I did not judge the blameless by his (i.e the liar’s) word.
I answered evil with good.
And I did not seek after wickedness,
So that I might endure on earth
And achieve worthiness.
Remembering recent history these kinds of acts for people should take precedence over curiosity and putative claims about human genetic diversity research.
One can argue for a virtues based ethics for exploratory human biologists, including population geneticists interested in the goals of the HGDP. A virtuous scientist would address the putative future general benefit in which the key research participants currently have no say in developing the interpretation of these data, and who in fact lose control and ownership in the current system of arrangements. (Indeed one should ask who owns Archbishop Tutu’s DNA, or the right to study it, the right to be empowered to study it?) A virtues-based ethics would require the researchers to change the scientist-“subject” arrangements, assure the survival of the communities, their self-determination, and work to their total betterment before taking and interpreting their DNA.
Patrimony also implies something about interpretation. One of us was once told by a geneticist in a spirited exchange that the data of science was truth/facts, but interpretation was more heat and subjective, implying it (whether wrong or right) to be of little concern. This position is interesting, and fits in with Sarukkai’s observations. However, interpretation does have a value and can have a cost. It was pointed out that the wrong interpretation of the fact of abdominal pain and tenderness in the emergency room can lead to an unacceptable cost (the loss of life).
Some few themes related to genetic studies of Africans and one diasporic group have been addressed. There is an ongoing issue about the ethics of the context of this work, related to patrimony and respect for autonomy as well as other principles. The ethics of curiosity have serious implications for work in Africa in light of the colonial past, neocolonialist relationships, the effects of past and present exploitation and ongoing biased and callous attitudes. A concern for justice is very important. Any future African human genomics and diversity project must, as with its Asian counterpart, be under the auspices of Africans who are the primary investigators. The virtuous position on this is not the cynical version of the Golden Rule: “He who has the gold makes the rules.” There is something else: a just foreign aid and virtuous science would make sure that concern about the overall wellbeing of people ranked far above the curiosity of non-Africans and Africans. Aid to help the development of the capacity of Africans to do their own and most relevant research first would also reflect a virtuous respect for peoples, and should rank secondary to data collection and analysis by outsiders. Organizations like the Gates Foundation and moral wealthy individuals from all continents could greatly serve humanity by helping in this sort of foundational project. Africans must also develop policy that demands this level of respect, which means ending a lot of ‘bakshish’ and prosecuting those guilty of it. Hopefully no one will think it is acceptable to merely collect data for a HGDP type project from vulnerable African populations— people poisoned by the oil spills in the Niger Delta, gunned down in Darfur, politically disenfranchised in other regions, denied full participation in societies in a number of places, and subject to the exploitation of others from the East and West—because they are “disappearing.”
Shomarka Keita, MD, D.Phil, is a physician and anthropologist. He received degrees in medicine at Howard University and biological anthropology at Oxford University.
James Stewart, PhD, is Professor Emeritus of Labor Studies and Employment Relations at Penn State University.
Shomarka Keita wishes to thank the members of his discussion group in the Intensive Bioethics Course given by the Kennedy Institute of Bioethics in June of 2010, at Georgetown University.