Worth contacting Uni ethics committee?

[NitroNine]

I’ve been asked to take part in some PhD research & was just reading through the information about the data they hold on you & was sadly unsurprised to find that, (emphasis mine):
The study will not involve the collection of any personal information about you except your age, gender identity, and information about your diagnosis which you can decline to answer if you wish.

This is not a health condition in any way linked to “gender identity”. It is, however, almost 4 times more common in women (38/100,000) than in men (9.6/100,000).

I absolutely do not want to cause issues for this student: the Ethics Committee itself is the issue because they’re the ones who approve the wording. Almost certainly it’s a template; & if it is, they’re contributing to massive corruption of academia & the scientific method in the interests of Being Kind. Or something.

There is no useful purpose to collecting information on “gender identity” unless studying it; &/or looking more broadly at the impact it may have (eg if researching experiences of bullying gender ID would be relevant - like sex, race, religion, disability, sexuality…). It’s also discriminatory, this assumption that we all have a gender identity - even my lack of one is not being “agender” in the same sense as someone who’d happily tick an “I identify as something special” box. They are still on board with the idea of gender being an inner sense everyone possesses. I have no gender because gender is an oppressive external force based on sex stereotyping. As the meme would have it, we are not the same.

Do you think there’s any point in trying to get the Ethics Committee to see they’re being, well, unethical?

There's a GDPR angle here. They shouldn't be holding data relating to protected characteristics unless they need it. If gender identity has no relevance to the research they have no reason to collect and hold that data.

I think there's always a point to doing this kind of thing; the point is not to 'win', its to raise the issue and protest the lack of ethics.
I hate the fact so many organisations pull this kind of stunt and then bleat 'well nobody complained'. Why should we have to? There are rules and guidelines ion place and they should just follow them without needing random members of the public to police them.

Yes I know - I'm that person

I think I would say something. Outside of certain circles it is not a term everyone understands. My DS was recently asked in a hospital appointment how he identifies (which was quite bizarre considering he had been having treatment for over a year). He’s a teenager brought up with all this stuff, but still sat their blank faced. Now consider asking the same question to an older person or a person who struggles with the English language etc. Look what happened with the census. Even if it is asked how relevant is that information? Legislation around the collection of personal data is strict. If the information is not relevant then it shouldn’t be asked for or stored. If a person’s sex is relevant then that is what should be sought.

Also, gender identity is not a protected characteristic.

It's personal (and potentially sensitive) information - so would come under GDPR - but not being a PC gives them even less reason to collect and hold it.

It's my understanding but also complete bollocks that gender identity can change - on a day to day basis in some cases (Mr Izzard). So what's the value in knowing what someone's gender identity is/was on a particular day in March 2023?

It sounds like sex would be a much more useful and unambiguous metric for the research!

Thank you, all of you: will get in touch with the Ethics Committee.

Do wish I’d thought of KnickerlessParson’s excellent point about those who ID as gender fluid before I complained to HMG that their new online form for applying to get/renew a Blue Badge doesn’t simply request gender rather than sex; but the options given are man, woman, & other. (The last may have identify-as stuff around “other”, but the other is key bit - and it’s not free text, so you can’t use it to tell them you’ve no gender, just the sex observed & recorded at birth.) At least, as the form is being Beta Tested I used the feedback form provided to, well, feed back; I’ve not made a formal complaint to anyone. (Yet? 🤔)

WRT this particular research it really is very worrying they think gender ID rather than sex is appropriate information to collect as not only is the condition so much more common in women & girls, despite that fact, the average length of time it takes to be diagnosed is longer for them then boys & men 🙄🤦‍♀️ If for some reason they want to explore whether or not gender ID has any impact on how an individual navigates their condition

It’s extremely poor experimental design to collect data on a protected characteristic that is irrelevant to the research and omit a characteristic (sex) that is highly relevant

It's standard now to ask for gender ID in place of sex in uni research. I get undergrad surveys from one university's psych students every year to fill in and 99.9% of the ones I've seen in the past 3 years do not ask for sex, but some form of gender ID. Given that most of these are replications - or supposed to be - I cannot understand how they get through even the preliminary sign offs. Or even pass!

That are not switching gender ID for sex, to compare outcomes. It's literally in place of.

So it would be great if this could be raised with ethics boards, because university research guidelines are undermining their own research, and they're sewing the seeds of this from the earliest stages. At the same time, I don't hold out much hope for change unless it's forced upon these boards. I get the sense that they're on rather a high floor in the Ivory Tower.

...which you can decline if you wish to

I'm pretty sure it's collected so they know how to address a participant and not cause upset. No other untoward reason.

There are always options to decline statements in a consent form. That's the purpose of consent.

The firm is all encompassing for everyone, so just decline that statement. No need to go making a fuss to ethics because it doesn't suit YOU

The study will not involve the collection of any personal information about you except your age, gender identity, and information about your diagnosis which you can decline to answer if you wish.

So don't complain about something which might totally invalidate the research ? You did notice that the sex of the participant wasn't asked for, or did you miss that?

If they need to know salutation or pronouns then they need to ask for that. Under GDPR asking for more info than required is not allowed (and especially sensitive and undefined concepts like gender identity).

It's like asking your sexuality to find out whether you should refer to someone's partner as he or she- the wrong way round and over the top. Just ask for the information you have a genuine need for.

@AmuseBish
Sorry, but you're wrong. There is a consent process and it's up to the person to consent or not. There is a legal basis for research in GDPR. They are not collecting this information without consent - which is what you're referring to.

The principles of data collection are that you ask for what you genuinely need and no more. Why would you ask for gender identity when you need pronouns? What is the case for holding that information?

How would I go about finding out what my gender identity is? If it can't be defined then asking for it is pointless anyway.

The fact that they are not collecting all the data that is essential for their research is the issue. This is why the OP should complain to the ethics committee.

@aweegc would you be able to contact the Ethics Committee of the university you fill out the annual surveys for to express your concerns? I completely understand you might not feel able if it’s a long-term project.

@Butterfly44
🤦🏻‍♀️
It’s not it “doesn’t suit” me. It’s that research into health conditions needs to collect data on sex to be useful. Collecting information on “gender identity” doesn’t tell them how to address participants; they are collecting it rather than the relevant & necessary information about participants” sex; & doing so is harmful. An additional optional question about gender ID wouldn’t bother me in the slightest - but it is sex that matters here. As I noted in my earlier posts, this condition is almost 4 times more common in women (38/100,000) than in men (9.6/100,000) - but despite that fact, the average length of time it takes to be diagnosed is longer for them then boys & men. Ethics Committees approving the use of gender [identity] in place of sex is harmful; particularly to women who are already disadvantaged by the Default Male model of medicine. It is unfortunate if people choose not to provide information on their sex as it makes research less useful. Collecting gender ID rather than sex in health research is deeply damaging; just as it is harmful to record gender rather than sex in healthcare provision (eg risk of missing pregnancy in a trans man resulting in stillbirth; &/or when evaluating lab results, as when considering an individual’s eligibility for kidney transplant).