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Submission to NHMRC on Draft Standard on sex, gender identity

  • 6 Feb 2024 6:42 PM
    Reply # 13311190 on 13291285

    Hi all 

    I missed this interesting topic and do not feel I should really comment on such guidelines

    However can I regale a small anecdote

    Recently a GP noticed I had rather high PSA and referred me to a urologist he obviously just pulled from a list on his system

    When I contacted the clinic I had the embarassment of being told that it was a women's clinic and they could not take me as a patiient

    Should I have demanded to be let in

    As an aside I now have a new GP

    No further comment, except that when I see the urologist for any prostate issues, I hope the research has been accurately and precisely done on the correct cohort

    regards Duncan

    Last modified: 6 Feb 2024 7:00 PM | Duncan Lowes
  • 5 Jan 2024 9:16 AM
    Reply # 13297187 on 13291285

    Thanks Matt and I agree with your comments. Perhaps this is an opportunity for the SSA's equity, diversity, and inclusion committee to provide a statement too.

  • 27 Dec 2023 10:56 AM
    Reply # 13294465 on 13291285

    Thanks very much Ben for taking the time to write a carefully-considered rebuttal of the points raised in "NHMRCMRFF response final." I hope that Chris, Karleen and the other signatories take the opportunity to reflect on their approach to the topic and revise their submission based on your feedback.

    The very real harms caused by refusal to acknowledge the validity of gender-diverse people far outweigh any perceived threat to the purity of some arbitrary definition of "biological sex." The Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables (ABS, 2020) and the draft NHMRC/MRFF Statement are important documents that provide useful guidance for researchers, particularly in survey design. I am sure there is some room for improvement, but in my opinion the "NHMRCMRFF response final" submission completely misses the mark.

  • 18 Dec 2023 10:39 AM
    Reply # 13291963 on 13291285

    I had a brief scan through the document and there seem to be a few issues

    From ‘Key issues’:

    4. The draft NHMRC/MRFF Statement uses the term ‘gender’ to mean ‘gender identity’, even though it is well recognised that ‘gender’ is often understood to mean ‘sex’ and this confusion of concepts is a problem in health and medical research.

    I'm not sure what's being said here. The draft statement pretty clearly lays out the definitions of sex and gender, and explicitly identifies three concepts underlying the term 'gender'. I think that's part of the statement's goal, to clear up confusion between the sex and gender? In its current wording it seems like this point is advocating for the word gender to mean sex, which doesn't make sense.

    5. The draft NHMRC/MRFF Statement is not explicit about the nature and problem of the female data gap in research, and does not use the word ‘women’ in a sexed meaning, thereby obscuring the phenomenon itself and the sexism underlying it.

    This kind of follows from the previous point and seemingly confuses sex and gender. Depending on what the authors intent was, it would be good to clarify whether the issue is a 'female' data gap if we're talking about sex or a 'women' data gap if we're talking about gender. Or perhaps they mean to say a 'cisgender women' data gap?

    6. The draft NHMRC/MRFF Statement recommends that researchers should use desexed language in study recruitment and, for example, not use the term ‘women’ in a sexed meaning but rather uses phrases such as ‘people with ovarian cancer.’ It does not consider how desexed language might reduce inclusivity, increase confusion, dehumanise, or alienate potential study participants.

    This point should probably include the full quote from the draft statement’s suggestion for consideration because currently the point seems disingenuous:

    Do the eligibility criteria use inclusive language that enables all potential participants to see themselves in the research, such as replacing ‘women with ovarian cancer’ with ‘people with ovarian cancer, including, cis women, trans men, non-binary people'?

    The point as it stands seems to suggest that the draft statement recommends desexed language in all situations, whereas if you read the section which the quote is drawn from it becomes clear that the use of inclusive language is recommended in situations where it is warranted given the research population. To drive home the point, if you were researching ovarian cancer generally, it would make sense to use language which includes all people who can potentially get ovarian cancer. If you were only interested in trans men’s experience of ovarian cancer then you would be specific in your language.

    I’d be interested to see research on whether inclusive language actually excludes people. I’ve always thought that women are people too, and language like suggested makes it clear that cisgender women are included in ‘people with ovarian cancer’.

    9. The draft NHMRC/MRFF Statement does not recognise that data on sex is being lost due to the prioritisation and replacement of gender identity over sex in data collection. It does not contain any text describing the consequences of loss of data on sex, particular for women and children, or guidance on when data on sex should be collected.

    This point misrepresents the draft statement. The draft statement encourages researchers to consider sex and gender in their research context and to collect the appropriate variable(s) accordingly, which in some cases may mean that gender is collected instead of sex, however to say that gender is being prioritised over sex in all cases is a strawman argument.

    10. The draft NHMRC/MRFF Statement includes a definition of sex that is partially based on characteristics that can be changed, and therefore it supports the idea that biological sex can be changed. It also contains text suggesting that this is the case. It does not consider how this idea is harming the health of individuals, introducing errors into Australia’s health data sets and undermining research.

    The first sentence is just outlining the logical consequence of the different definitions of sex. It seems to me that researchers being clear in the definition they are using for sex would reduce errors entering into datasets, strengthen research, and avoid harming individuals. It feels more like the notion that sex can change is harming the author’s ideas of what sex should be.

    From ‘Key recommendations’:

    2. The NHMRC/MRFF Statement should highlight the female data gap, the sexist nature of this gap, and the importance of accurate collection of data on and disaggregation by sex in order that the female data gap be addressed. There is need for the NHMRC/MRFF to take leadership and ensure that data on sex as a biological variable continues to be considered in research and is not replaced by legal sex, self-reported sex, or gender identity.

    I think the current draft statement makes it clear that researchers should be collecting sex according to the definitions relevant to their research questions, so in instances where a certain aspect of sex (e.g. chromosomal) is relevant then the researchers are encouraged to collect data on that accurately. I’m curious though how the authors of the response intend to collect data on sex if not through self-report.

    3. The NHMRC/MRFF Statement should use the term ‘women’ in a sexed sense to mean ‘adult female person’ throughout.

    Perhaps the authors could reconsider including wording that is consistently used in anti-trans/TERF discourse on sex and gender. The draft statement makes it pretty clear that female is used in relation to sex while women is used in relation to gender.

    4. The NHMRC/MRFF Statement should include guidance for researchers on when data on sex should be collected. We argue that that would be in any circumstance where physiological/anatomical differences between the sexes or gender (meaning social expectations of the sexes) may be relevant. It should be specified that this includes any circumstances where women’s reproductive capacity (ability to become pregnant) or reproductive work (pregnancy, birth, breastfeeding, or care of infants) may be relevant.

    The draft statement does include guidance on when to collect sex, it’s in the giant table at the end of the document. This point seems redundant to me and like the authors are just taking an opportunity to push a narrow view of sex and gender again.

    5. The NHMRC/MRFF Statement should use a scientific definition of sex that is applicable to humans and animals and should reserve the terms ‘male’ and ‘female’ for referring to the sexes.

    This recommendation seems to suggest the current definition isn’t scientific. It would good if the authors of the response could provide a definition they consider to be suitably scientific beyond “A person's sex is based upon their sex characteristics, such as their chromosomes, hormones, and reproductive organs.”

  • 15 Dec 2023 7:16 PM
    Message # 13291285

    The NHMRC have asked for submissions on their new draft guidelines on sex and gender identity. The attached submission is the result of the efforts of dozens of academics interested in health science. 

    If you would like to add your name to this submission then you should directly contact Karleen Gribble (K.Gribble@westernsydney.edu.au).

    For you convenience, I list the key recommendations below.

    • 1.      The NHMRC/MRFF Statement should emphasise the importance of collecting accurate data on sex, gender identity, variations of sex characteristics, sexual identity, sexual attraction, and sexual behaviour where it is appropriate and beneficial to do so.
    • 2.      The NHMRC/MRFF Statement should highlight the female data gap, the sexist nature of this gap, and the importance of accurate collection of data on and disaggregation by sex in order that the female data gap be addressed. There is need for the NHMRC/MRFF to take leadership and ensure that data on sex as a biological variable continues to be considered in research and is not replaced by legal sex, self-reported sex, or gender identity.
    • 3.      The NHMRC/MRFF Statement should use the term ‘women’ in a sexed sense to mean ‘adult female person’ throughout.
    • 4.      The NHMRC/MRFF Statement should include guidance for researchers on when data on sex should be collected. We argue that that would be in any circumstance where physiological/anatomical differences between the sexes or gender (meaning social expectations of the sexes) may be relevant. It should be specified that this includes any circumstances where women’s reproductive capacity (ability to become pregnant) or reproductive work (pregnancy, birth, breastfeeding, or care of infants) may be relevant.
    • 5.      The NHMRC/MRFF Statement should use a scientific definition of sex that is applicable to humans and animals and should reserve the terms ‘male’ and ‘female’ for referring to the sexes.
    • 6.      The NHMRC/MRFF Statement should recognise and acknowledge that not everyone applies the concept of gender identity to themselves and provide guidance on data collection on lack of gender identity.
    • 7.      The NHMRC/MRFF Statement should disaggregate the three aspects of sexual orientation, namely sexual identity, sexual attraction and sexual behaviour, because each of these can be important to health research, health policy, health communication, and healthcare provision. Clear definitions of sexual identity, sexual attraction, and sexual behaviour should also be provided in the Statement.
    • 8.      The NHMRC/MRFF Statement should recognise that sexed language is, in most instances, the most inclusive language form, but should also support the use of desexed/gender identity-prioritising language for specific purposes such as in research focussed on transgender and gender diverse people.
    • 9.      The NHMRC/MRFF should build upon the ABS Standard and develop its own standard for data collection on these variables, tailored specifically for health and medical researchers.
    • 10.  The NHMRC/MRFF Statement should provide guidance to researchers on how to negotiate a balance between what stakeholders want and the need to ensure inclusion of relevant variables and ensure data quality on sex, gender identity, sexual identity, sexual attraction and sexual behaviour.

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