I had a reporter ask me once why genetic counselors don't agree with the 23andMe perspective that everyone has a "right to their own data." I was confused because that isn’t my experience with what genetic counselors believe, nor do I see my own perspective differing from 23andMe CEO Anne Wojcicki’s oft-repeated mantra that people have a right to their own information.
My response to the reporter was this: We actually don't disagree but we differ on the nuance. Where genetic counselors often differ from other free-the-data the advocates at this point is our persistence in believing that everyone has a right to accurate results when their DNA is tested and a right for their results to be presented to them in an understandable way. People also deserve to know their testing is almost never their FULL DNA sequence, which is a common point of misunderstanding that advertisements and TV commercials are glossing over at this point.
There has been some progress in the the world of at-home testing, but it is still not perfect.
I am proud to be a genetic counselor supporting the rights of people to access testing at home while simultaneously advocating for improvements to the way it is reported. Have you already tested and have you been confused by your 23andMe or Promethease or other report? Me too! The 23andMe macular degeneration report for people who get a positive result is pretty bad at explaining risk, for example. But some of the other reports are redeeming. There is still great room for improvement with reports from 23andMe and other at-home tests and third-party tools.
I’ll extend this point to the discussion surrounding access to raw DNA data files as well.
Providing someone access to their DNA raw data isn’t leveling the playing field, neither is it particularly “empowering.” If anything, access to raw data is creating a divide between people who have to accept their at-home testing results as “true” and those who realize their limitations and can navigate the system to find and afford genetic counseling and pay for confirmatory testing. Like Laura Hercher reported in her NY Times opinion piece and like Matt Fender emphasized in the lengthier interview about his experience getting confirmatory testing for a worrisome Alzheimer’s DNA result.
Those who FACe difficulty and barriers navigating the process of figuring out whether to believe a finding in the raw data are left in limbo.
They may end up carrying a lifelong belief (one that is possibly wrong) they have a terrible genetic fate ahead. Or they may have been falsely reassured by their report/results and fail to identify actualy, real risks and then follow up with medical management that can slow the onset of a medical condition looming in their future.
I’ve pointed out the shortcomings of raw data in past posts using some examples from my practice
Most simply put, giving people raw DNA data files out of context is not equivalent to granting people rights to their own data.
Every time this comes up, and two are conflated, I am aggravated.
The “rights to your own data” debate needs to be reframed. We are beyond the point of debating whether people have a “right” to their own info. It’s pretty much the majority that believe you don’t keep someone’s info from them because it’s in your own personal or professional interest to do so.
The debate at this point should be about rights to accurate information with support in making sense of it.
Please make sure to make this point any time you see the conflation of “rights to DNA data” being used as a proxy for equality and better health care.