Data we need
Data we need
Doctors warn against the corrupting of medical records
The rise of self-declared gender in medical records, obscuring biological sex and denying doctors crucial information and time, is dangerous and already leading to misdiagnosis, Genspect’s Bigger Picture conference has heard.
Canadian physician Dr Lori Regenstreif told the conference in Ireland on Saturday that biological sex traditionally was “at the very top of the [patient’s] chart.”
“That immediately conveyed medical information from one colleague to another, and a lot of that is being erased [by subjective gender].”
She said an accurate sex marker was necessary for doctors to decide diagnosis, treatment and referrals to pathology or specialists.
“NIH expects that sex as a biological variable will be factored into research designs, analyses, and reporting in vertebrate animal and human studies. Strong justification from the scientific literature, preliminary data, or other relevant considerations must be provided for applications proposing to study only one sex [male being the default sex in much research]... Adequate consideration of both sexes in experiments and disaggregation of data by sex allows for sex-based comparisons and may inform clinical interventions”—policy of the United States National Institutes of Health
“Sex designations on birth certificates offer no clinical utility, and they can be harmful for intersex and transgender people. Moving such designations below the line of demarcation wouldn’t compromise the birth certificate’s public health function but could avoid harm”—article by Shteyler et al, The New England Journal of Medicine, December 2020
Fatal error
At Genspect’s conference, Dr Regenstreif said she had been asked by a coroner to give her opinion in the case of a 42-year-old transwoman, a biological male, who had gone to the emergency department with chest pain over some weeks.
“[The doctors were] saying, well, she’s a female, she’s on oestrogen and she’s only 42. Her risk of a heart problems is low. And this happened repeatedly, until she actually died in her room of a heart attack.”
Dr Regenstreif also related an account from a Facebook parents’ group where a mother had made herself unpopular because she would not go along with her daughter checking the “non-binary” box on the driver’s permit form.
“And the mother said, ‘Nope, if you get in an accident, I want them to know what you are’.”
Video: British sociologist ProfessorAlice Sullivan on sex and gender in data
Listen carefully, our menu options have changed
“Smartform” choices offered by an electronic medical records system used by hospitals in North America—
Gender identity: Cisgender female, cisgender male, female, male, transgender female/male-to-female, transgender male/female-to-male, other, choose not to disclose, non-binary, 2-spirit, something else, don’t know
Patient’s sex assigned at birth: female, male, unknown, not recorded on birth certificate
Affirmation steps patient has taken, if any: presentation aligned with gender identity, preferred name aligned with gender identity, legal name aligned with gender identity, legal sex aligned with gender identity, medical or surgical interventions
Organs the patient currently has: breasts, cervix, ovaries, uterus, vagina, penis, prostate, testes
Organs present at birth or expected at birth to develop: breasts, cervix, ovaries, uterus, vagina, penis, prostate, testes
Organs surgically enhanced or constructed: breasts, vagina, penis
Organs hormonally enhanced or developed: breasts
Detrans debrief
In her addiction medicine practice in Canada, Dr Regenstreif said she was seeing more patients—including some referred from the U.S.— who had undergone medicalised gender change, some with post-surgical complications, as well as detransitioners (who cease hormonal treatments and often re-embrace their birth sex).
At Genspect’s conference in Ireland, Dr Regenstreif and a few other doctors met a group of attending detransitioners for a workshop on their special needs.
“The detrans workshop revealed to me that there is a lot of fear, anxiety about their health issues and the usual, encyclopaedic internet experts out there always eager to mislead them about their conditions,” she told GCN.
Detransitioners have reported difficulty changing their medical records to reflect the fact that they have abandoned their trans or non-binary gender identity and re-embraced their birth sex. Some say they have lost trust in the health system, and struggle to find practitioners who understand their needs and are willing to help them.
The Genspect conference was told that work had begun on the creation of a medical training curriculum for the care of detransitioners and their post-transition complications.
“When the media made claims regarding ‘gender fluidity’, I was appalled. When it reached medical schools and I heard we were training doctors to believe and practice blatant lies, I was relieved to join [Do No Harm] and help out”—testimonial from an Arizona physician for a new U.S. organisation, Do No Harm
Afraid to ask
Also presenting during Saturday’s session at the Genspect conference was Dr Carrie Mendoza, director of FAIR in Medicine and a hospital emergency physician working mostly in the south side of Chicago.
Dr Mendoza outlined the case of a 25-year-old transwoman, a biological male, who came to the emergency department with abdominal pain.
“You get the history, some heavy drinking the night before. They have a benign abdominal exam, labs are unremarkable. They’re given some Pepsin and Maalox [for the stomach], the pain improves and the doctor gives them a diagnosis of gastritis and [the patient is] sent home—kind of common stuff,” Dr Mendoza said.
“So [the patient] returns a couple of days later with ongoing pain. A second doctor examines and says, ‘Well, I need to do a [genito-urinary] exam, basically a testicular exam.’
“And they note a right testicular mass and they order an ultrasound. And it turns out, the radiologist says it’s suspicious for cancer. So, they arrange for a biopsy, and the person ends up having testicular cancer.
“So that’s an example of a doctor who didn’t even think of doing a proper exam [when the patient first presented].”
“I’ve been working in child and adolescent mental health for 15 years [in the United Kingdom]. I worked in a crisis team, so we went into [the hospital accident and emergency department] regularly, needed the information quickly. We would get referrals and we would be expected to change the biological sex on the medical records for the Rio mental health system, and I know that that affects cervical screening and prostate screening [reminders] being sent. What can we do to challenge that, because it’s not acceptable”—Genspect conference participant
Dr Mendoza cited another case, reported in The New England Journal of Medicine, where a 32-year-old transman presented with abdominal pain, and entered the hospital system without being identified as a biological female, and suffered a painful miscarriage.
“This registration [of gender in medical records] based on what somebody feels, has implications for all of us,” said Dr Mendoza.
“There’s also a generation I see, of staff who are either scared or ignorant about asking to do a full exam because it’s, you know, politically incorrect to ask to do a testicular exam or to do a breast exam—that’s dangerous because you can miss things.
“These are humans, these are their bodies.”
Dr Mendoza said that in the U.S., a software overlay was used to enter information into the electronic medical record.
“It’s being messed with on multiple [occasions], like the game of telephone—and it has real implications for me in the emergency department,” she said.
“I think the message is that you have to be very, very aware of this going on now, because it affects everybody.
“I’m talking about the world of ‘how it really works.’ When you go in the hospital, it’s dangerous now, because they are registering people based on the sex that they say they are.
“It used be that [biological sex would be registered correctly] and in the margin, it would say, ‘identifies as a woman, likes to be called Sue’—and no one had a problem, we all respected that, but it was correct in the medical record, then that got changed with all of this.
“But you have to understand that this [gender identity movement] is ahead of the game and knowing how to make their political prescriptions a reality.”
She highlighted a journal article from ten years ago showing that the World Professional Association for Transgender Health, which acts as a lobby, was quick to recognise “they needed to get into the electronic health record because that is the reality in the hospital.”
Dr Mendoza encouraged everyone to insist that records show biological sex correctly and to alert hospital management to cases that illustrate the dangers.
Pregnant people
A male GP was prevented from donating blood to the Scottish National Heath Service because he refused to sign a form saying he was not pregnant. Dr Steffen McAndrew, 41, booked an appointment at a blood donation centre in Ayr... However, he was told by a nurse he could not continue unless he confirmed he was not carrying a child.
‘I can't believe they would refuse a donation from a man based on the fact I refused to say if I was pregnant,’ he said. ‘I just wish basic common sense could be applied in these situations. A man can’t be pregnant.’
A spokeswoman for the Scottish National Blood Transfusion Service said it had been asking potential blood donors if they were pregnant since April last year ‘for donor safety’. ‘Giving blood may be harmful for individuals who are pregnant, or who have been pregnant recently,’ she said—news report, Daily Mail, April 2023
‘Transmen are male’
Australian endocrinologist and gender clinician Dr Ada Cheung of the University of Melbourne was interviewed in August 2019 by MJA InSight+, a magazine affiliated with the Australian Medical Association. An excerpt follows.
InSight+ journalist: Masculinising hormone therapy for transgender men involves the administration of testosterone, the prescription of which is listed in the [taxpayer-funded] Pharmaceutical Benefits Scheme [PBS], but for specific indications not including transgender hormonal management.
“It’s not specifically listed [for transgender hormonal management] because the drug companies haven’t done studies specifically in transgender people and haven’t specifically applied to the Pharmaceutical Benefits Advisory Committee to get it transgender-listed,” said Dr Cheung.
“However, transgender men are males, and they have low testosterone levels, so they have androgen deficiency, and they don’t have testicles. So, we’ve been able to use the [PBS] indication of ‘androgen deficiency due to an established testicular disorder’. (Emphasis added.)
“So, prescribing for transgender males is not a simple thing of just getting a testosterone script. There are a few loops and hurdles that we have to jump over.
“Feminising hormone therapy for transgender women is more straightforward.
“Anybody with a prescribing number can prescribe estradiol therapy,” said Dr Cheung.
Note: GCN sought comment from Dr Cheung
Minefield. Great reporting
It would be challenging for a physician called to the bedside of a ‘2-spirit gendered’ individual writhing in pain and, I assume, most inappropriate if the physician were to ask “male or female?”