Requesting Information About Accutane Users From 23andme?

General Discussion
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#1

I got my 23andme kit a few days ago, and I was filling out the survey questions that they ask users to answer in order to help get more data. I got to a section that asked whether or not I had acne that warranted a prescription medication. I selected yes, and the very next question asked if I had taken Accutane. I found this interesting because this means that 23andme probably has acquired a lot of data about Accutane users that we aren’t aware of.

With this in mind, I was wondering if it would be possible at all to request information about Accutane users directly from 23andme. I’m not sure what the implications would be in doing this or if it would cost an extremely large amount of money to get the data, but I think it’s something worth noting. Although it didn’t ask whether or not I reacted poorly to it, maybe this could help down the line in some other way.

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#2

Hi @BearOf17,

That’s a great idea, one that we’ve already talked about. There are a number of hurdles to overcome but rest assured it’s something that if it looks like it will be both helpful and possible, it will be persued.

#3

Really? That’s very interesting… I’m about to do mine I wonder if it’ll ask me the same

#4

They ask about finasteride as well

#5

Great idea! You would think a company like 23andme would gladly want to share its data with medical professionals and the research community in order to help advance breakthroughs on treatment and diagnostics on life-threatening diseases. After all, their whole mission is to help people, right? You would think that and you would be dead wrong.

I hope one day I would be proven wrong, but 23andme or any other company could not give a rat’s ass how many people they could save (or kill) by doing something that doesn’t cost them a dime. What they care about is making money. That’s literary the only thing they care about, no matter what their PR department or executes say.

This is something very important to understand, especially for the young people here who still harbor idealistic notions about human nature and the world. I wish I knew this earlier in life. Unless there is a major way to profit from this data, I predict 23andme will not be releasing it or sharing it with anyone.

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#6

I think if there is a very cynical reason for hope, it might be that because of their greed, enough people become afflicted with PFS and/or PAS that it results in some kind of political action. Now, you see companies like “Hims” advertising and offering finasteride via mail now. Since wealthy and prominent people will want to keep their hair, perhaps eventually someone with power or influence will acquire it, or have a family member commit suicide from PFS after taking Propecia.

The cynical truth is that companies like “Hims” are probably good for us, since this type of accelerationism is the only thing that will result in the scientific community taking us seriously. If we had a small amount of social capital to affect anything, it might be utterly despicable to actually promote finasteride. But it’s another reason why our message should be focused on finding a cure, rather than trying to warn people away from finasteride or its promotion, which won’t work anyways.

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