ELSIcon2022 Paper: The Genome and the Biome: Cystic Fibrosis @ Six Feet Apart

ELSIcon2022 • Paper • May 31, 2022

Rebecca Mueller

Though cystic fibrosis is often referenced as a mendelian genetic disease, it also provides insights about the human microbiome and the unforeseen consequences of microbial knowledge. As genomics becomes central to the investigation of outbreaks, cystic fibrosis is a critical case study of novel diagnostic technologies, risk, and sociality. Using historical and ethnographic methods, I trace how a bacterial epidemic in the CF patient population profoundly altered the community as policymakers made efforts to circumvent routes of infection. With increasingly austere guidelines recommending the separation of people with CF from one another, the community was reconfigured by risk, with physical gatherings increasingly replaced by socialization on the internet. At the same time, researchers recognized that one highly transmissible CF pathogen called cepacia was being developed by agricultural and industrial microbiologists for environmental applications. In response, CF researchers built bridges between scientists working in silos and garnered the support of the Environmental Protection Agency to limit environmental deployment of cepacia. While environmental regulations speak to the legal implications of useful bugs that harm a minority, cross-infection risks between CF patients reveal legal challenges associated with microbial and genetic discrimination, social implications for the CF community, and ethical questions about patient autonomy and the weighting of risks against benefits. The CF story is therefore informative for considering what happens when genetic and microbial risk collide, when ethical, legal, and social implications of the genome and biome overlap in a Venn diagram.