Cancer - Data skewing

[FruHagen]

Just seen this on Twitter - a campaign that has successfully merged the category of female and trans woman in some MacMillan cancer needs assessment.

I don't think they have a "sex" box to tick just "gender".

This seems so dangerous to start messing with data that could impact cancer care, onboarding of treatment and research- if male bodied people are included then how will the sex differentiated cancers be focused on? Looks like women will lose out if their data is skewed.

What can be done to stop this - once data is established it's very hard to unpick. At the beginning of this time where data is the foundation for machine learning it's integrity is really really important.

twitter.com/thismorningcall/status/1106923852435722240?s=21

"Fighting against the tide" ? Are they effing kidding? Riding high on the massive tidal wave, more like.

Honestly so they'll see symptoms of prostate cancer in females rise, Or completely overlooked because females can't get that

Symptoms of cervical cancer rising in men or overlooked because men can't get that.

Harmful to it's core. Macmillan. I can't believe it.

Oh FFS, how can people in these organisations not see how harmful this is?

Have a gender identity box if you must, but there needs to be a box for sex.

Every day there's another onslaught. This is really wearing me down

Someone has pointed out on the thread that "trans female" must mean transman, which would make far more sense and would be safer on a medical health form.

MacMillan!

I feel like fainting and crying.

I'll contact them today. Please others do the same.

DpWm That would make more sense. But given that some of the TRAs say that they are now female, that question is not clear on the form.

Macmillan still need to have birth sex on there, to make it clear. Gender identity has fuck all to do with health issues related to one's sex.

Sounds like one of the very first tasks of the LGBT health adviser www.mumsnet.com/Talk/womens_rights/3535263-1st-Government-National-Adviser-for-LGBT-Health-appointed-and-a-panel should be an information campaign among the trans community about how some health conditions are linked to sex and that this won't change, even when a person's gender identity does.

If the assessment is about non health needs, like financial problems because of illness, then I personally think it is ok not to ask about sex but reading the thread about Joan McAlpine and transgender crime I realise that we have really lost the plot in terms of when to record sex/gender. For surveys about topics like your favourite type of coffee, it's totally fine to go with gender and omit sex. Topics where there are observed sex differences like recorded crime, health, and pay need to record sex, even if they have a supplementary question on sex at birth.

I worry about this too. For example the recent heavily promoted campaign to get more women to go for cervical screening (Jade Goody etc). Apparently numbers are dropping again. How do they/will they know if that is genuine or because its transwomen who pretend to be women not bothering to go because they know they dont have a cervix so there's no point.

Yes if it's in addition to "sex" on the form then I suppose it's just a courtesy.

Also if it means a woman transitioning to a man ("trans female" as it says in the form) then his body is still female so technically ok. But as this was a reply to someone saying how much transphobia there is on Twitter it just seems that's not the case. Wonder why!

In this super interesting Twitter thread the NHS have strict guidelines on using both sex and gender in data collection. Sadly it seems people are not following the guidelines.
We need some sensible education for all involved.

This thread is great

twitter.com/hairyleggdharpy/status/1062360988702466048?s=21

calpop I'm afraid it's worse than you think - cervical screening is at its lowest in a generation:
www.telegraph.co.uk/news/2018/11/27/cervical-cancer-screening-rate-falls-lowest-least-21-years/

I cannot believe that cancer research scientists pay any heed to gender when they are running in vitro experiments. But when new treatments head out of the lab, I wonder how clinicians recruit patient participants to trials. I really hope that trans people diagnosed with cancer are able to hold on to reality and recognise that their biological sex may well impact their disease. Revealing their underlying sex may be embarrassing or worse (think receptionists calling out the wrong name), but receiving inappropriate treatment could be much worse.

Having a cancer diagnosis is an awful position to be in, and I just hope we can collectively find a humane, compassionate, effective way through this. Many TRAs seem to feel that shouting "Trans women are women" is enough - some of that is bullying, but some I think is defensiveness. I don't know what it takes to stop bullying, but I do know one way out of defensiveness is providing good clear resources presented in a way that the target audience will accept, and that can allow a psychological shift.