Let's reinvent the mammogram so it isn't effing torture!

[SciFiSam]

@puzzlegal

I spit into a test tube today, as part of this study. And when I activated the test kit, it asked me what sex I was assigned at birth (and had a text field if I wanted to say more about that.) This was a custom process for people in the wisdom study. I’m sure, because I used a laptop for part of the process, and my phone for part, and at some point it got confused and asked me if I was signing up through the wisdom study, and if so, told me I had to use their custom activation script.

So … It certainly looks like they are expecting to get data from some transwomen.

Thank you for following up on this.

If they’re taking your assigned sex at birth into account, then they can still use the data because they can filter for people who were not assigned female at birth. It does require everyone to be honest, but so do most medical trials.

I hope the eventual overall results will only include people assigned female at birth rather than everyone who potentially participated in the study, and they did ask, so they can filter the data in that way.

Including a few extra people who were assigned male at birth but now identify as female is not that big a deal if they’re filtered out of the overall results - they will still be followed up, and their data could potentially be used for other studies (if they agree to their anonymised data being used for other studies, which I think is standard?)

It still misses out anyone was assigned female at birth but doesn’t identify as female. They could be a missed group for breast cancer, same as with lesbians and cervical cancer.

Did they ask anything more about medications, btw?

[eschrodinger]

I wish people addressing the gender issue would remember that there are more than just transmen and transwomen. Nonbinary is a thing. And a lot of non-cisgendered people who were assigned female at birth don’t take hormones and don’t have surgery. But they also don’t identify as female.

It just seems to me that the “identifies as female” criterion might have been created with an incomplete view of who would be included or excluded.

[puzzlegal]

@SciFiSam

Including a few extra people who were assigned male at birth but now identify as female is not that big a deal if they’re filtered out of the overall results

I assume they won’t be “filtered out” but rather, “analyzed separately”.

@SciFiSam

Did they ask anything more about medications, btw?

They asked a lot of questions about hormone use, but that’s all I remember. They again asked about some health conditions i don’t have. Perhaps if I’d said i had those, they would have asked about other medications.

[puzzlegal]

@eschrodinger

It just seems to me that the “identifies as female” criterion might have been created with an incomplete view of who would be included or excluded.

That’s possible. I agree that non-binary people with breasts would seem like valid participants.

[Broomstick]

@puzzlegal

If it were a study of how to treat breast cancer it would make sense to include men. (And attempt to oversample them, to get enough data to be meaningful.) But this is a study about monitoring for breast cancer, specifically, how often to have mammograms. I don’t see much point in including men in this study.

Men who have had breast cancer certainly should be monitored going forward, but I agree that would probably be a different study.

The non-binary issue is another complication.

However, studies generally need some limitations to be manageable.

[Drsunflower1]

@puzzlegal

Anyway, i assume that the reason men aren’t routinely screened for breast cancer is that it isn’t common enough in men to be considered worth the cost and the risk of false positives. But maybe it’s just bias.

I think the a priori chance for a male to get breast cancer, since it’s much lower than in women, means that with the test being used right now the chance of a false positive outcome exceeds by far the chance of catching a tumor. Mammograms are in the 70% range of sensitivity (iirc, med school has been a while ), and that’s only in women older than 30. Below that age the tissue is too dense to get an accurate image by mammography. I’m not an oncologist, but I seem to recall this from my clinical decision making classes. At least in the Netherlands, ultrasound is recommended in women younger than 30 or who are pregnant, but that’s in symptomatic cases, not for screening purposes.

[eschrodinger]

The radiation from repeated mammograms can also cause cancer. It’s a relatively low risk, and it is outweighed for women by the benefits of catching cancer early. For men, that calculus would be different, though.