Would You Want to Know?

We at 23andMe hear this question a lot when the topic of personal genetic testing comes up. We each have our own answer, but enterprising PBS NewsHour correspondent Spencer Michaels simply went out and asked.   It’s helpful to hear from people on both sides of the issue about why they would or wouldn’t want to know about their genetic risks for certain illnesses. The short segment accompanied a broader discussion on the show about a study by Kaiser Permanente and UC San Francisco that combines genetic and health records of patients at the HMO. The hope is that the study will shed new light on the genetic causes for disease. Unlike the work done by 23andMe where customers have access to their data, participants in the Kaiser study do not get access to their genetic data. For many of us, having that access gives us the knowledge to make changes that can lessen those risks. The information allows us to take preventative actions or simply to be more aware.  
  • I didn;t have any reluctance to see what my genome had in it. I understand that some things – Huntington’s chorea would be one example – would be a nasty thing to find in my gene history. But let’s face it: I know my family history, and what people suffered from, and what they died of. I was relieved when no really serious Alzheimer’s markers came up (though there isn’t much of it in my family). There’s lots of cancer, though, and again, I was relieved to see that I had no huge genetic markers for it.

    But I would have wanted to know.

  • Guro Sæverhagen

    Is it only genetic risks for certain illnesses that will be discovered in a gene test?

  • John

    It’s unethical for anyone to conduct a genetic study and then deny the participants the right to access their data. I certainly hope that the Kaiser study authors get fined.