Who Should Have Access to Your DNA?

https://medium.com/backchannel/who-should-have-access-to-your-dna-6830fbf8dc79

by interkats • 12 years ago

12 2 12 years ago

grownseed• 12 years ago

"Are we to rely on physicians, who largely have no grounding in genomics, to actualize the genomic medicine revolution?"

I don't think this should really be the role of physicians, or at least not solely.

I personally really wish the public sector (here in Canada) would undertake similar efforts to 23andme. My group does to an extent (for specific cancers mostly), partly research-grade and partly clinical-grade, but we're very limited in scope and resources, and hence scale.

Add to that the crazy politics at play which incur huge costs in terms of duplication of effort (e.g. everybody's implementing their own variant annotations databases expecting everybody else to chime in) and also really limit how and what information can be shared.

For instance patient data is mostly anonymized, yet that doesn't guarantee you can share this information freely with other research groups or even clinical groups. This is only the tip of the iceberg though, the barricades faced by the public health sector here (and I suspect a lot of other places too) are only getting worse. Meanwhile, private organizations have practically no problems sharing information internally or plowing through (often using research backed by the public sector).

If we want genomics and the benefits that come with it to become more widespread, the public would need to demand greater transparency and efficacy from the public agencies that rule over the health sector. Of course, the public would also have to be willing to invest more (or better) in their health, which is considerably easier said than done. Finally, people working in the health sector might appreciate not feeling like they're going to get sued all the time ; their time might be better used if they didn't spend half of it filling in forms after forms or writing 100 pages validation documents every time they change a couple of lines of code... The public is, most likely unknowingly, largely responsible for that.

derekja• 12 years ago

That's not exactly what happened. The FDA required 23andme to stop reporting health risks as if they were properly vetted medical data. I think that's the wrong decision, and it did have the effect of greatly limiting their market in the US, but you can still do a 23andme test and then just go to Promethease to get just as detailed a look at all the health implications as 23andme provided (and still provides to the rest of the world.)

The FDA did not shut down 23andme or make them stop offering DNA tests, they stopped them offering interpretations of those tests.

Who Should Have Access to Your DNA?

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