Genders

[josharmenta]

Hi @rkrenn, where can I edit the genders in the software? FDA requirement, I need to add 10 more genders for our clinical trial. Thanks!

[rkrenn]

you can always create your own gender-dropdown for inquiry forms or eCRFs. these you can adjust any time, in the Phoenix UI directly.

the sysmtem-wide gender dropdown (eg. visible on the subject main tab) relies on the org.phoenixctms.ctsms.enumeration.Sex enumeration. it is used in application logic, eg. to derive gender-specific salutation. so the steps there are basically:

• extend the enumeration with the additional items (in the UML model)
• add translations

can you show the list?

[rkrenn]

how to proceed here, do you have a list for gender optionitems?

[josharmenta]

Hi Rene,

Sorry, I was moving in the last two weeks. Just circling back to this now.

https://www.sfdph.org/dph/files/policiesprocedures/com5_sexgenderguidelines.pdf

These are the guidelines from the State of California. They differentiate Gender Identity and Sex Assigned at Birth. The recommendation has to do with genetic variances of medical interventions in transgender individuals.

[rkrenn]

seem i cant open the link from Austria can you upload the pdf here, or send by mail?

They differentiate Gender Identity and Sex Assigned at Birth.

we did to achieve something similar, ended up with this:

FEMALE=female
MALE=male
TRANSGENDER_FEMALE=transgender female
TRANSGENDER_MALE=transgender male
NOT_APPLICABLE=not applicable
NOT_KNOWN=not known

"not applicable" was eg. intended when using the system for studies with organisms other than humans. therefore the signup portal currently has a reduced mapping, which you can override in https://github.com/phoenixctms/bulk-processor/blob/master/CTSMS/BulkProcessor/Projects/WebApps/Signup/views/proband.tt:

        <select id="gender" name="proband_gender" required>
            <option value="">[% l('no_selection_label') %]</option>
            <option value="MALE"[% session.proband_gender == 'MALE' ? ' selected="selected"' : '' %]>[% l('male') %]</option>
            <option value="FEMALE"[% session.proband_gender == 'FEMALE' ? ' selected="selected"' : '' %]>[% l('female') %]</option>
        </select>

[josharmenta]

Here's the relevant section.

7. Two questions should be used together to identify sex and gender.
SFDPH should ask these two questions, together as follows and in this order, to acquire sex and gender demographics about both the person’s present gender identity and his or her history.
1. What is your gender2? (Check one that best describes your current gender identity.) (1) Male
(2) Female
(3) Trans Male
(4) Trans Female
(5) Genderqueer / Gender Non-binary16
(6) Not listed, please specify____________________
[Survey forms would include options 1-6. Coding should also allow for options 7 and 8] (7) Declined / Not stated
(8) Question Not Asked
2 These definitions should be considered as being fluid rather than static variables.
(1) Male - the behavioral, cultural, biological, or psychological traits typically associated with males
(2) Female - the behavioral, cultural, biological, or psychological traits typically associated with females
(3) Trans Male – transgender men, transmasculine, or transmen, sometimes referred to as female-to-male
or FTMs
(4) Trans Female – transgender women, transfeminine, or transwomen, sometimes referred to ‘male-to-
female or MTFs
(5) Genderqueer or Gender Non-binary – two of many reclaimed gender identities among persons who
do not subscribe to conventional gender distinctions; may feel their gender as neither, both, or some
fluctuating combination of male/masculine and female/feminine genders.
(6) If not listed, please specify_______ - this category provides options for people to state their specific
transgender identity (or identities), as well as an “additional category” which will help clarify the many
possible transgender identities.
(7) Declined Not Stated – this category provides the individual the opportunity to opt-out from stating
their sex or gender identity.
(8) Question Not Asked - this category allows the provider to mark ‘Question Not Asked’ if the sex or
gender question was not asked in an effort to alleviate any provider assumptions.
  gender expression than the one assigned to them at birth.
Data Collection Principles
6. Sex and gender should be self-identified.
    Barbara A. Garcia MPA, Director of Health, San Francisco Department of Public Health Page 5 of 11
SEX AND GENDER GUIDELINES: Principles for Collecting, Coding, and Reporting Identity Data –rev 9/2/2016
 2. What was your sex at birth? (Check one) (1) Male
(2) Female
[Survey forms would include options 1-2. Coding should also allow options 3 and 4] (3) Declined / Not stated
(4) Question Not Asked
There are a variety of definitions today of what is “sex” and what is “gender.”17 In many cases people will mix-up or conflate these terms and, regardless of one’s personal definition, for data collection purposes it was determined to ask gender in order to differentiate between question one and question two.
In question one, we recommend providing multiple options for people to state their specific transgender identity (or identities), as well as an additional “please specify” category to help
18
The second question requests a person’s sex at birth. Though some people are born with a Disorder of Sex Development (DSD), currently only “male” or “female” is assigned to each
19
Social identity data are protected health information. Sex is a required field in DPH data systems and is viewable by individuals, as allowed, for treatment, payment, and operations purposes. However, when transgender status is identified for people younger than 18 years of age, documenting their identity should be done with sensitivity and caution knowing that legal guardians may access their child’s medical record, including demographic information and all service records (excluding services requiring minor consent).
Minors should be notified that their gender data field cannot be hidden from their guardians.
In the event that transgender identity is collected in the clinical setting for minors between
the ages of 12 and 17 and is documented in the clinical notes, the DPH Minor Consent
3
3 Minor Consent Policy, Section II, 1, iv, c & d: Collecting basic demographic information on clients is an important part of a first visit to a primary care or behavioral health clinic. For LGBT youth however, questions about gender or sexual orientation may be anxiety producing if parent/guardian is unaware that they identify as transgender, gay, etc. When asking youth questions about their gender and/or sexual orientation at registration or through health history, it is important to assure the youth that this information will be kept confidential when collected under minor consent, and that this information cannot be disclosed to parent/guardian or other outside person or agency without the youth’s express permission. Included in the basic demographic information are the following questions: what is your gender, what was your sex at birth, what pronoun should we use in addressing you, and how do you describe your sexual orientation or sexual identity. For transgender identified youth, it is extremely important that there be good communication among the health care team (from registration to discharge) particularly related to chosen gender, name and appropriate pronoun use.
clarify which of the many transgender identities with which people may identify.
newborn and only one of those two categories are placed on a birth certificate in the U.S. Once DSD, or “Intersex,” is assigned at birth and placed on birth certificates, these guidelines need to be revised to include the option in the second question.
In addition, SFDPH should ask and record:
1. What is the appropriate pronoun to use when addressing you?
2. What is your chosen name?

[rkrenn]

ok so basically it is easy to setup that in an eCRF or inquiry from right away. let me know if help needed with that.

regarding the gender field in the Subject main tab (which is fed by the signup) i would otherwise propose to extend what we have like this:

(1) add two items

• Genderqueer / Gender Non-binary

• declined to the existing "Gender" field items FEMALE=female MALE=male TRANSGENDER_FEMALE=transgender female TRANSGENDER_MALE=transgender male NOT_APPLICABLE=not applicable NOT_KNOWN=not known

  note that the "Gender" field omits a freetext option for now.

(2) an an addtional field: "sex at birth", with only MALE FEMALE DECLINED NOT_APPLICABLE NOT_KNOWN

by default the UI can show synchronized selections of "Gender" and "Sex at birth" fields. this is also what should be done to migrate existing data.

will that fit?