[TTPrograms]

Thanks to the 23andMe test I found out have I think 6 of 8 rare bad variants of various genes that give me what's currently estimated at around a cumulative 50% chance to develop a particular type of leukemia late in life. Of course, 23andMe doesn't provide this information - I came across it accidentally while studying my SNPs with other third party tools.

I don't really think about it that much - experimental treatments for it are already basically curing the disease and if I do get it it probably won't be for another 20 or 30 years. But now I can be the tiniest bit proactive - getting my CBC checked every few years, and watching out for unusual symptoms like fatigue.

The challenge is in communicating these things properly with fair analyses of the probability - we have X model that predicts Y risk, and we have Z error bounds on that. While it's unfortunate that most people lack the education to interpret statistical statements like that, I don't see why that should legally preclude me from getting information relevant to my health without a gatekeeper geneticist to hold my hand through "this variant has 1% prevalence, that means that 1 in a hundred people have it...".

[fudged71]

This is the purpose of Genetic Counselling. A friend of mine does this and I can certainly see the value in having someone who understands the science walk you through the outcomes.

[mrfusion]

I see genetic counselors as gatekeepers to the information about our own bodies. Just give me my results and let me figure it out for myself. If some people want the service of a counselor let them get it but don't bar people from their own bodies.

We research other issues ourselves and the world hasn't ended. Imagine if you weren't allowed to read the Bible but had visit a "bible counselor" if you wanted to find out about things in the Bible. (I use that example because people make serious life decisions based on the contents of the Bible all the time. )

[zimzam]

Not sure if you're trying to be ironic but that's exactly how it worked for many hundreds of years: remember that historically speaking, outside the Church most people couldn't read. One source estimates that in 1300 CE only 6% of England's population was literate! "Bible counselors", aka priests, were indeed the only way for most people to get information from the bible.

[cariaso]

It didn't matter that they were literate, since printing a bible in english was still illegal. It was only in 1526 that https://en.wikipedia.org/wiki/William_Tyndale created the first bible in English, allowing the common folk to go around the 'Bible counselors'. As a result the church had him convicted of heresy and executed by strangulation, after which his body was burnt at the stake.

[fudged71]

You can absolutely analyze the data yourself, a genetic counselor is a value-add that can provide an ethical medical recommendation based on the data.

[mrfusion]

My friend got a genetic test for her son and they refused to give her the results until she saw a genetic counselor.

[TTPrograms]

It's one thing to say "this has value for some people" and another to say "you're legally obligated to do it this way (costing $x more)".