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Fireside Chat, Interview

Jenny Reardon: The Science and Ethics of Genomics

  • Universal genome sequencing is projected to become technically feasible in the near to intermediate future, with financial viability increasingly emerging despite current resistance from university hospitals.
  • Legal liability is anticipated to arise if medical providers fail to disclose accurate information regarding meaningful variants of unknown significance in genes such as BRCA1 and BRCA2, shifting responsibility to providers once data becomes available.
  • The medical objective for cancer is forecast to shift from "curing" the disease to "keeping cancers at bay," as immunotherapies face risks of failure due to off-target attacks on organs like the liver.
  • Individual genomic value is expected to rely on population-level comparative analysis, with single genomes holding independent worth only when contextualized against millions of other genomes.
  • The initial hypothesis linking common diseases to common variants proved unsuccessful, making the medical value proposition for common diseases more difficult than anticipated, though companies with massive databases can still sell data to pharmaceutical firms.
  • Pharmaceutical companies may utilize large genomic databases to locate individuals with undiagnosed rare genetic disorders, while long-term care insurance providers are actively seeking consumer genetic data, raising concerns about access denial.
  • Risks include law enforcement using open-source databases to identify individuals based on relatives' crimes and the potential for insurance restrictions on long-term care coverage due to genetic information.
  • Gene editing success rates are highly variable, ranging from 20% to 98%, leaving error margins of 2% to 50%, while cloning experiments historically resulted in significant life loss and malformed offspring.
  • Future human experiments face the risk of causing real harm similar to past failures in gene therapy, underpinned by the biological reality that life processes are imprecise and "messy," creating ongoing ethical challenges.