“Bioethics in Action” and Human Population Genetics Research

Abstract

Recent disputes about human population genetics research have been provoked by the field's political vulnerability (the historic imbalance of power between the geneticists and the people they study) and conceptual vulnerability (the mismatch between scientific and popular understandings of the genetic basis of collective identity). The small, isolated groups often studied by this science are now mobilizing themselves as political subjects, pressing sovereignty claims, and demanding control over the direction and interpretation of research. Negotiations between the geneticists and the people asked to donate DNA have resulted not only in explicit bioethics protocols but also in diffuse anxiety over the incommensurability between expert and non-expert views about genetic evidence for identity claims. This article compares two disputes over genetics research: the Human Genome Diversity Project and the use of genetics to prove identity claims among the Melungeons of Tennessee. The case studies illustrate "bioethics in action": how particular controversies and interests drive the production of bioethics discourses and techniques (such as informed consent protocols). They also illustrate some limits on the usual apparatus of bioethics in overcoming this science's multiple vulnerabilities.

Recent human adaptation: genomic approaches, interpretation and insights

“…Most of the earliest genomic scans for adaptation 5,13–19 focused on population samples from phases I and II of the , including Yoruba individuals living in Ibadan, Nigeria; Han Chinese individuals living in Beijing, China; Japanese individuals living in Tokyo, Japan; individuals with European ancestry living in Utah, United States; and/or Perlegen population samples (African American, Asian American and European American). This work has been complemented by more recent studies that have included genomic scans for adaptation in the Human Genome Diversity Project (HGDP), which includes 51 worldwide population samples 11,12,20–22 .…”

DNA and cultures of remembrance: Anthropological genetics, biohistories and biosocialities

“…Research into and knowledge about genetic history may be welcomed or rejected, and/or adopted for particular identity-political purposes (Parfitt and Egorova, 1996;Brodwin, 2005). In Alondra Nelson's (2008) study on African American customers of genetic ancestry tracing services, individuals showed some flexibility in the appropriation of the genetic information.…”

Bioethics in the Making: “Ideal Patients” and the Beginnings of Face Transplant Surgery in Mexico

“…Bioethics is no longer viewed simply as a set of abstract principles and guidelines implemented to reproduce the legitimacy and authority of medical professionals (Kleinman, 1996(Kleinman, , 1999Rosenberg, 1999;Timmermans and Berg, 2003). In examining the relation between personal experience and formalised ethics, authors have demonstrated the various ways in which bioethics influences and is played out in vis-à-vis specific economic, political, and medic-scientific scenarios (Petryna, 2002(Petryna, , 2005(Petryna, , 2009Brodwin, 2005Brodwin, , 2008Brodwin, , 2012Jasanoff, 2005;Stark, 2010). Ethical regulation varies between local contexts in relation to specific economic and political circumstances, while ethical deliberation often takes on the characteristics and concerns of the (nation) State in which it is taking place (Jasanoff, 2005;Petryna, 2005Petryna, , 2009Sperling, 2007).…”