Hospitals are increasingly providing elective genome sequencing to predict diseases for wealthy (often healthy) clients.
Who is doing this: Healthy clients can visit a number of academic centers, clinics, or The University of California San Francisco, the Mayo Clinic and the nonprofit HudsonAlpha Institute for Biotechnology provide such elective genome sequencing.
Economic Disparities: Patients can pay taxpayer-funded centers and private corporations anywhere from $250 to $7,000 out-of-pocket for whole genome sequencing and interpretation.
What they’re saying: “The idea that genomic sequencing is only going to be accessible by wealthy, well-educated patrons who can pay out of pocket is anathema to the goals of the publicly funded Human Genome Project, and creates new disparities in our health care system,” states Dr. Jonathan Berg, a genetics professor at the University of North Carolina.
Privacy: With genetics and biotechnology companies like 23andMe partnering with pharma companies, there are escalated privacy concerns among the public. The risk is real. When one organization shares the data with another, there are chances that an unintended third party can intercept the data. These concerns also extend to any blood relatives that don’t consent to such data use.
Moving Forward: With elective programs, such as genome sequencing, and highly-regarded gene therapies that quickly cure diseases becoming multi-million dollar investments, there may be a growing healthcare disparity based on economic status.
Keep it Positive: Understanding the concerns, we should be reinvigorated that these technologies will provide people with a second chance at life and may establish further breakthroughs with the human genome.