Jessica Bardill

Advancing the ethics of paleogenomics

Ancestral remains should be regarded not as “artifacts” but as human relatives who deserve respect Recent scientific developments have drawn renewed attention to the complex relationships among Indigenous peoples, the scientific community, settler colonial governments, and ancient human remains (1, 2). Increasingly, DNA testing of ancestral remains uncovered in the America s is being used in disputes over these remains (3). However, articulations of ethical principles and practices in paleogenomics have not kept pace (4), even as results of these studies can have negative consequences, undermining or complicating community claims in treaty, repatriation, territorial, or other legal cases. Paleogenomic narratives may also misconstrue or contradict community histories, potentially harming community or individual identities. Paleogenomic data can reveal information about descendant communities that may be stigmatizing, such as genetic susceptibilities to disease. Given the potential consequences for Indigenous communities, it is critical that paleogenomic researchers consider their ethical obligations more carefully than in the past.

Creating a data resource: what will it take to build a medical information commons?

National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.

Identity as Socially Constructed: An Objection to Individual Change

Without social forces to condition their desires, affiliations, and expressions, individuals do not simply create and control their identities. Identity itself relies on various inputs of social construction, and the idea put forward by Earp, Sandberg, and Savulescu (2014) that individuals are the best point from which to decide and make change requires further consideration, particularly regarding sexual identities, where change inherently affects communities. To illustrate this point and the perspective left unaddressed in the piece, I examine their use of a popular song, their premise of identity as self-made, and the harm that can come to communities, including those unacknowledged by the authors. Finally, I return to a tension within the article and various enhancement thought pieces about the conditions under which these rules, premises, and objections (including my own) hold. From the beginning of their essay, Earp, Sandberg, and Savulescu set up a tension between the individual and the larger society. The epigraph demonstrates a popular and mass approach to this subject, not an examination of the minority position itself, as the authors credit the more popular and more privileged white male singers who include a queer white female’s work in their popular hip-hop song, itself a genre of black resistance to white dominance. Mary Lambert wrote and sings those lines, and she identifies as a lesbian (or as the authors use, “sexual minority”). While it is important for artists like Lewis and Macklemore, white straight males with particular privileges tied to those socially constructed identities, to advocate and ally with same-sex love persons, the use of the song here followed by the idea that we can change that orientation denies the ways in which options and desire are structured in society, providing an easy fix that perpetuates a larger problem. Earp, Sandberg, and Savulescu assert that identity is a personal construct within one’s control as an important given for their argument about the possibilities of allowing an individual to use the inevitable anti-love technologies to allow a conversion away from same-sex love. However, while a few elements of identity are within one’s personal control, our identities (sexual and otherwise) are largely influenced by social interactions as well as the bio(psycho)logical aspects of self (many of which are not within our control either, such as most of our genetic inheritance). While the idea that one is “born this way” and “cannot change” implies an essentialism of sexual identity (DeLameter and Hyde 1998), and therefore the logical appeal should be to the individual as the source of identity

Ancestors and Identities: DNA, Genealogy, and Stories

Stories structure our identities, from how we recognize ancestors to how we make inferences about DNA. In this chapter I explore the use of stories by indigenous peoples and scientists—categories that are not in tension but which overlap—across case studies of contemporary and ancient individuals engaged in genomic testing from North and South America, and poetry reflecting on these cases from Heid Erdrich (Turtle Mountain Ojibwe). I show how these various narrations help construct ways of being, belonging, and becoming “indigenous” in relation to genetic and genomic sciences.

Chaco Canyon Dig Unearths Ethical Concerns

ABSTRACT The field of paleogenomics (the study of ancient genomes) is rapidly advancing, with more robust methods of isolating ancient DNA and increasing access to next-generation DNA sequencing technology. As these studies progress, many important ethical issues have emerged that should be considered when ancient Native American remains, whom we refer to as ancestors, are used in research. We highlight a 2017 article by Kennett et al., “Archaeogenomic evidence reveals prehistoric matrilineal dynasty,” that brings to light several ethical issues that should be addressed in paleogenomics research. The study helps elucidate the matrilineal relationships in ancient Chacoan society through ancient DNA analysis. However, we, as Indigenous researchers and allies, raise ethical concerns with the studys scientific conclusions that can be problematic for Native American communities: (1) the lack of tribal consultation, (2) the use of culturally insensitive descriptions, and (3) the potential impact on marginalized groups. Further, we explore the limitations of the Native American Graves Protection and Repatriation Act, which addresses repatriation but not research, because clear ethical guidelines have not been established for research involving Native American ancestors, especially those deemed “culturally unaffiliated.” Multiple studies of “culturally unaffiliated” remains have been initiated recently, so it is imperative that researchers consider the ethical ramifications of paleogenomics research. Past research indiscretions have created a history of mistrust and exploitation in many Native American communities. To promote ethical engagement of Native American communities in research, we therefore suggest careful attention to ethical considerations, strong tribal consultation requirements, and greater collaborations among museums, federal agencies, researchers, scientific journals, and granting agencies.

Genetic Ancestry Testing

From the large public interest in genealogy to academic research in human genetic diversity, genetic ancestry testing is a developing area that requires attention to interpretation of data and the ethical involvement of people and human populations. This article reviews the important definitions in genetic ancestry testing, ethical considerations in the uses of genetic ancestry testing, large-scale projects (including commercial ventures) that use the technology, and finally the limitations that have to be considered in uses of the tests.

Parts, Transmission, and Remains: How Blood Makes and Is Made Into Life

In Blood: The Stuff of Life (Anansi Press, 2013), an extremely ambitious, yet partial, history of blood in human life and imagination, Lawrence Hill interweaves biological facts, medical histories, personal stories, and figurative uses of blood (including identity and personality). While this text is not without its flaws, it does provide an engaging examination of a fluid that Hill rightly points out is the stuff of life—both literally and much more metaphorically. Hill reviews how it has been understood and misunderstood, applied to various situations, and taken to mean much more than a biological substance. In doing so, Hill ties together his own visceral experiences as a runner, a diabetic, a father, and a son. His status as the son of a black father and white mother who emigrated from the United States to Canada to raise him and his siblings is particularly important for his analysis. He therefore also draws upon much Canadian history, culture, and specific cases to illustrate his examination of how this particular bodily fluid has come to signify in complex ways about seemingly contradictory notions: immortality and impermanence, purity and disease, trouble and salvation, honesty and heritage. Throughout this review, my use of the term blood mirrors Hill’s own taking up of the complex literal and figurative uses of it in individual and community health, identities, and values. To begin, it should be known that this text is not Hill’s first meditation, nor the first from his family, upon the social and biological life of race. He refers to these previous texts and the work of his father and brother throughout these pages, including indicating why over time he has become more and more interested with how blood circulates in the body, in systems, and in social constructions and rhetorical references. These chapters coincide with his presentation of the five-part Massey Lectures across Canada, sponsored by the Canadian Broadcasting Corporation. Importantly, Hill uses this text to expose specific Canadian relations to blood, such as key persons, as well as more global uses of blood as a means of health and harm. Within the body, Hill describes the components of blood and how they, when working properly together, provide health and, when not, can result in disease such as sickle cell anemia or Hill’s own diabetes. That understanding requires a review of the Western history of how blood and disease were understood and a reasonable assertion that our assessment of bloodletting may be similar to how our descendants assess our own technologies in the future. This review and assertion place the text squarely within a Westernized set of thought even as they work to critique that framework. Hill does not provide non-Western examples (at least ones that had not already been affected by settler colonial logics) to contrast with these ideas or systems, but instead demonstrates what the popular understanding of the substance might be to the power majority of North Americans or Europeans. For example, in describing the blood of the menstrual cycle, Hill presents how Aristotelian thought constructed women as weak and men as the ones who could properly use their blood to fight for nations but also goes on to cite feminist Gloria Steinem for the idea that if men were the ones to bleed the logic would run oppositely. In both of these cases the arguments would perpetuate patriarchy and undermine the power of women. In contrast, an explicit attention to particular indigenous thought, such as that of the Cree in Canada, would have demonstrated that women menstruating are understood as having too much power, which could change the minds of those around them, or could cause alterations in the world not due to pollution but excess life. Hill smartly draws upon feminist critiques of Aristotelian thought but does not go further to offer an alternative to it. Within systems, Hill describes the history of blood banking (how it was made possible and by whom, following failed transfusions between people and animals), as well as contemporary issues around blood as vector for particular infections, namely, hepatitis C and HIV, and