Privacy, family history, and genomes

1 minute read

Razib Khan comments on the ethics of making your genome public without the consent of your family: “On genetic privacy”.

For example, if you have one of the high penetrance BRCA mutations, you may not want to expose your familys information for pragmatic reasons. But my question would be: why do people talk about their highly heritable illnesses in public forums already? Ive seen media profiles of women with a BRCA mutation, with female relatives. By talking about this theyre exposing their familys genetic information implicitly. Therefore, I suspect many of the pragmatic concerns are moot, because though there is privacy in regards to health information, there isnt a taboo about discussing ones health status in public.

Many people diagnosed with highly heritable disorders don’t make their diagnoses public. Many talk publicly only after consulting with relatives. There may not be a taboo against discussing health information, but there is certainly no expectation that health diagnoses are public information. Many people believe that their family’s health is nobody else’s business and act accordingly.

Still, this is an important point. Why do we perceive it as being more invasive to sequence a genome than to take a family medical history?

The family history point suggests that there is no ethical standard. You do not have an expectation of privacy about your relatives’ medical conditions.