Where Does Your Genetic Data Go After Death?

While we may have an idea as to where our digital data goes when we die, what about our most personal digital information: our genes?  Millions of Americans are sharing their genetic information using services like 23andMe and OpenSNP. 

Some scientists, doctors, and bioethicists are worried that we have not figured out if and when to share our genes from beyond the grave.  Because we share lots of genetic information with our parents and siblings, some deem DNA “shared property,” to which relatives should have a right.  Yet, this can get tricky as we share different parts of DNA with different family members.  Moreover, there are patient privacy laws protecting what doctors can reveal about their patients—even posthumously. 

This week, four Dutch scientists published an opinion advocating granting family members access to sequenced DNA only if it is explicitly requested.  The scientists wrote that this would respect the deceased person’s privacy, while also allowing relatives who actually want the information to get it from doctors and genetic counselors. 

Until further guidance is provided, the best course of action would be to impart genetic information while you are still alive.  “I counsel all patients to share clinically relevant genomic findings with their relatives while they are alive,” Rebecca Pentz, a bioethicist at Emory School of Medicine says.  Alternatively, you could upload all your data for anyone to see.

See Daniela Hernandez, What Happens to Your Genetic Data When You Die? Fusion, March 4, 2015.