ABSTRACT
As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations.
Subject(s)
Gene Editing/ethics , Genome, Human/genetics , Bioethical Issues , Embryo, Mammalian , Germ Cells , HumansSubject(s)
Coercion , Controlled Clinical Trials as Topic/ethics , Prisoners , Quality of Health Care , Therapeutic Human Experimentation/ethics , Educational Status , Ethics, Research , Government Regulation , Human Experimentation/ethics , Human Experimentation/legislation & jurisprudence , Humans , Motivation , Public Policy , Quality of Health Care/ethics , Quality of Health Care/standards , Research Subjects , Therapeutic Human Experimentation/legislation & jurisprudence , United States , Vulnerable PopulationsABSTRACT
Although the meaning, significance, and definition of race have been debated for centuries, one thread of thought unifies almost all of the many diverging perspectives: a largely unquestioned belief that race is self-evident and visually obvious, defined largely by skin color, facial features, and other visual cues. This suggests that "seeing race" is an experience largely unmediated by broader social forces; we simply know it when we see it. It also suggests that those who cannot see are likely to have a diminished understanding of race. But is this empirically accurate?I examine these questions by interviewing people who have been totally blind since birth about race and compare their responses to sighted individuals. I not only find that blind people have as significant an understanding of race as anyone else and that they understand race visually, but that this visual understanding of race stems from interpersonal and institutional socializations that profoundly shape their racial perceptions. These findings highlight how race and racial thinking are encoded into individuals through iterative social practices that train people to think a certain way about the world around them. In short, these practices are so strong that even blind people, in a conceptual sense, "see" race. Rather than being self-evident, these interviews draw attention to how race becomes visually salient through constitutive social practices that give rise to visual understandings of racial difference for blind and sighted people alike. This article concludes with a discussion of these findings' significance for understanding the role of race in law and society.
Subject(s)
Human Characteristics , Race Relations , Skin Pigmentation , Social Conditions , Socialization , Visually Impaired Persons , Blindness/ethnology , Blindness/history , Cultural Characteristics/history , Education of Visually Disabled , Face , History, 18th Century , History, 19th Century , History, 20th Century , Humans , Population Groups/education , Population Groups/ethnology , Population Groups/history , Population Groups/legislation & jurisprudence , Population Groups/psychology , Race Relations/history , Race Relations/legislation & jurisprudence , Race Relations/psychology , Sense Organs , Social Conditions/economics , Social Conditions/history , Social Conditions/legislation & jurisprudence , Social Problems/economics , Social Problems/ethnology , Social Problems/history , Social Problems/legislation & jurisprudence , Social Problems/psychology , Visually Impaired Persons/history , Visually Impaired Persons/legislation & jurisprudence , Visually Impaired Persons/psychologyABSTRACT
A resounding debate has ensued over the utility of race in biomedical research, particularly as new drugs claiming to serve particular racial populations attempt to enter the marketplace. This creates a number of challenges for the Food and Drug Administration over how best to regulate new drugs seeking race specific indications. This article suggests that it may be beneficial for the FDA to turn to an area with experience negotiating such dilemmas--Constitutional Law--and its approach--strict scrutiny--to help guide when and under what circumstances Government should give effect to racial categories in biomedicine.
