Is genomic research on the DNA of ancient human remains ethical? The problem arises because of the age-old issue of “informed consent.” Normally, researchers must obtain the express written permission of study participants before including them in a research project. Moreover, their involvement is subject to guidelines that protect their anonymity and the confidentiality of their participation and in some cases also delimit the planned end uses of the research. In this article we will discuss the ethics of paleogenomics research.
But do any of these standard research protocols apply if the study participants are deceased – in many cases having died centuries ago, in obscurity – and aren’t in a position to consent to having their remains studied?
The question is beginning to divide researchers in the burgeoning field of paleogenomics. Some argue that the issue of informed consent is moot – the remains are akin to found art – or artifacts – and belong in the public realm. As long as specific individuals, families or groups aren’t identified by name, there is nothing unethical about mapping the genetic patterns of our ancestors to try to cure deadly diseases or better understand patterns in human evolution.
But others say the issue isn’t so simple. Many of our ancient ancestors are still linked to modern living cultures, some of them indigenous peoples still marginalized by the European-dominant mainstream. Shouldn’t these communities have some say in how paleogenomic research is conducted and for whose benefit?
The debate over this issue first surfaced publicly in 2017, after a team of genomic researchers examined 14 bones from long-deceased residents of the Pueblo Indian community in New Mexico. The bones had been excavated decades earlier by archaeologists but never further examined. The researchers made a remarkable discovery: based on the genetic evidence, and their location, the bones suggested that the Pueblo community was decidedly matrilineal, which anthropologists had never suspected.
While some scientists hailed the discovery, others criticized the manner in which the research had been conducted: without the consultation or participation from Pueblo community descendants. Some genomic researchers are taking a hard stand, suggesting that research only be conducted based on contemporary principles of “community-based participatory research” which dictate that the targets of research also share in its design and ownership every step of the way. This stance goes far beyond the traditional notion of “informed consent.” It suggests that communities might exercise something akin to a veto power over forms of research they find insulting or contrary to their needs.
Anthropologist Alyssa Bader, coauthor of an article about ethics in human paleogenomics in the 2022 Annual Review of Genomics and Human Genetics says the issues are not so clear-cut and must be sorted out on a case-by-case basis. Real abuses have occurred, and sometimes the damage done is unintentional. For example, is the public marking of the bones of cherished ancestors by body part – for example as “cranium1” or “femur2” – demeaning to those individuals and to the current community? Some suggest that it is. Others say that descendants are overreaching by claiming “informed consent” – and now, even “ownership” – on behalf of their ancestors. Strictly speaking, informed consent is granted on an individual basis – not by group, and long after the fact. Where do these quasi-political proxy rights end, critics say, and at what cost to the march of science?
Bader and others say the issue requires cultural sensitivity and self-awareness — and above all, a willingness to dialogue where needed to defuse sources of potential conflict. In fact, it is not that hard to fashion workable compromises, she suggests.
Issues of cultural appropriation and ethical abuse have long plagued the fields of archaeology and anthropology. It’s hardly surprising that genomic researchers now face the same issues. However, even the field’s staunchest critics recognize and support its extraordinary potential for world humanity. The latest sign? In 2022, Swedish geneticist Svante Pääbo won the Nobel Prize for Physiology “for his discoveries concerning the genomes of extinct hominids and human evolution.” Paabo’s research revealed some of the critical links between ancient Neanderthals and modern homo sapiens, vastly expanding our knowledge of human evolution. So far, no surviving Neanderthals or their descendants – if they indeed exist – have stepped forward to demand a share of Pääbo’s prize.