-: Good afternoon, everyone.
Welcome to Ethics Grand Rounds.
My apologies, Doctor Tervinak, Frank Tervinak,
had to cancel a couple of weeks ago
because of a scheduling conflict.
And we hope to reschedule him for our next season.
So that's why the person on the poster outside
doesn't look like a Frank Tervinak.
The person who is on the poster outside
is one of our own, Doctor Jennifer Wimberly,
who we are both very grateful to have as a faculty
associate, as well as a Parkland Health
and Hospital System staff physician.
And is,
I'm pleased to announce,
will start being the
new Chair of the Parkland Ethics Committee,
starting December 1st, next month.
Doctor Wimberly has had an interesting,
even perhaps meandering path to her current position.
She, at Kent State, she majored in Philosophy
with a minor in
bioethics or medical ethics.
She went on to get her,
go to medical school at Georgetown.
Excuse me,
yeah, that's right.
Georgetown University Hospital, getting residency training
in surgery and then ultimately urology.
Spending a couple of years at Georgetown as a staff,
urology attending, then coming to Southwestern in 2009
in the department of urology, still with her interest
in ethics, clinical ethics and bioethics intact.
She
wasted little time in getting involved
with the ethics program, teaching in the colleges,
serving on the Parkland Ethics Committee,
and doing ethics consultations.
She perhaps,
found that her true love was doing ethics consultation,
and ultimately left Southwestern
to be a full-time staff physician
in a variety of interesting positions,
which I'll talk about in a minute.
During all this turbulence, had how many children now?
Two.
Her house was partially wrecked from the tornado.
But before all that she was able
to get a masters degree in bioethics
from the MCW bioethics program, just this past year.
She now has, I wanna be sure and read this
to get it correct: She's a physician
in the community-oriented primary care transgender clinic
at Parkland, and divides her time doing ethics consultation.
The work in the transgender clinic, and also,
leading the initiative of the Joy at Work
Committee at Parkland, as well.
She's starting to launch her publication career
in these related areas, and so she's gonna talk
to us now about the nomenclature problem
of Intersex conditions,
and sort of the ethical challenges
and cost involved with that.
So, without further ado, please welcome
Doctor Jennifer Wimberly. (audience applauds)
-: Good afternoon, thank you all for coming.
Thank you, John, of course, for that wonderful introduction.
For your many years of mentorship and continued mentorship.
And Liz, thank you as well, for the recommendation
to substitute for this; I'm privileged and honored
to give this talk today.
And thank you as well for your wonderful
mentorship and friendship, Liz.
I have to thank my colleagues in urology.
I remain volunteer faculty at UT
in the department of urology.
And it was, the pediatric urologist, Linda Baker,
who really got me interested in this topic,
weaving together my training in ethics and urology.
And I began giving this talk in 2011.
I've given it many times, and it's changed over the years.
But essentially, what it is is,
a continued discussion on the controversies.
And what I hope I could offer that bioethics can do
to relieve some of the tension
in the differences of sex development.
So, I do have a circuitous path to where I am today,
but I am very happy to be here today
and talk with you on this topic: Intersex Implications
of Umbrella Terms in the Interest of Science.
And for any of you who are familiar with the controversies
surrounding this topic, Intersex DSD,
Differences in Sex Development.
All of the terms that you'll hear.
You'll recognize that the controversy also includes
the terminology I use, so please, when you ask questions
at the end, feel free to ask why I chose
to use whatever term I did.
So I have no financial disclosures.
I do think it's pertinent that I let you all know
that I currently serve as a task force member
for the American Psychological Association on DSD
slash Intersex, as it's termed.
And this will be approximately a two- to three-year
endeavor with the Psychological Association
in an interdisciplinary group of
experts who were chosen in this field.
And it's intended to really focus on the role of psychology
in interdisciplinary care, for individuals
with Intersex or DSD.
And the focus includes several things.
What makes up, what is the composition
of a good interdisciplinary team?
What's the balance of power, for lack of a better term?
In all of the different disciplines?
Who all should be included?
Does it vary, is it always the same?
Do religious and pastoral care advocates,
patient advocates, are they applicable?
Do medical ethics, medical ethicists come into play?
And what exactly would make up
the best interdisciplinary care?
Focusing on psycho-social well being.
And so I wanna be very clear on what my objectives are,
because I am not here to resolve the controversies,
but I am here to try to offer what bioethics can do
to alleviate this tension.
So I list here my objectives,
and I hope I accomplish them by the end.
So first would be to really understand the controversies
surrounding the 2006 Consensus Statement on Intersex
that classified individuals into three categories
of Disorders of Sex Development, as it was termed.
To identify the historical background that has supported
a classification system.
And to expand the concept of fully informed consent,
to include identity within this ever-growing umbrella term
that includes DSD and Intersex.
And hopefully at the end, I would like to apply
some educational and research methodologies
that would allow for identity and individuality
to normalize these differences.
So, thereby answering: What can bioethics offer?
And I wanna start out by noting what my biases are.
They become apparent as I give this talk,
and I've given this talk over the past,
but I want to make sure that everyone understands
these are my biases and they come right out
of my training from Georgetown.
So, I had the pleasure of training under the famed
bioethicist Edmund Pellegrino, who mentored me
over the many years I was there.
And this is not a picture of Edmund Pellegrino,
this is a picture of Aristotle, who is
known as sort of the founder, the father of Virtue Ethics,
and a very crude introduction, and I apologize
to all the bioethicists out there,
that the attention to Virtue Ethics that I apply
is one of character development and a habitual disposition
to utilize the moral virtue of Phronesis
and practical wisdom to do the right thing at the right time
for the individual for the right reason.
And that that promotes human flourishing.
The individual then will flourish.
So, that I received from my time with Doctor Pellegrino,
and coming from Georgetown I also was trained
in Principalism, as so many of us are.
Autonomy, beneficence, non-maleficence and justice.
And my bias is that I include, under the definition
of autonomy, as the right to self determination,
the right of your identity.
So I include identity in the right to self determination.
So, knowing where I come from, with my biases,
I think is the best way to go forward with this talk
from the beginning.
So does anybody know who this individual is?
Please don't yell it out, but can you raise your hands
if you recognize this individual?
Yes, one, one person may?
Okay, so I was thinking there may be a host of people,
'cause then the next question was gonna be:
Do you know this individual's bio-medical condition?
And do you know this person's identity?
This is, and forgive me if I mispronounce the name,
but this is Hannah Gaby Odiele.
She is a model, you'll see her all over.
She is a super model, for what that means.
She is from Belgium.
She has androgen insensitivity syndrome.
And she identifies as Intersex,
and as an Intersex advocate.
And at the young age she had two surgeries,
one to remove gonads, and one to create a vagina.
And she remains on hormone replacement therapy.
And she learned of this at approximately,
fully learned of this at approximately the age 17,
before undertaking her career as a model.
And she's since come out and been
a vocal advocate that neither she nor her parents
really gave the definition of full-informed consent.
So I want you to keep this individual in your mind
as we go through this talk, 'cause I'm gonna bring
it back later again, and ask some questions
with regard to the individual,
the biomedical condition, and identity.
So I'll jump into the 2006 Consensus.
So, I know this is small, but what I really wanted
to do was to show you the three classification systems
are the Sex Chromosome, D-S-D,
46, X-Y, D-S-D,
and 46, X-X, D-S-D.
So at the time of the Consensus,
50 international specialists came together
from pediatric endocrinology, gynecology,
urology, psychology, advocates,
and the goal was to really change the approach
to this condition that was previously termed Intersex.
And not only change the focus with regard
to the management and care, but to get rid
of terms that were considered pejorative at the time.
So, the root of many of these definitions at the time,
and I was in training when this change occurred,
crudely a 46, XY could be termed
a male pseudo-hermaphrodite.
So there was a term hermaphrodite as the root.
So if you were a hermaphrodite,
you had both internal and external organs
that had the mesonephric and paramesonephric ducts
that hadn't done its resolution
to identify as definitely female or definitely male.
So to get rid of those terms: hermaphrodite,
pseudo-hermaphrodite, and even Intersex,
at the time that was considered pejorative.
This classification system was developed.
And what I'd like to point out, again,
it was very small, but there's,
within the sex chromosome DSD, you can have a loss
of the sex chromosome, and addition
of the sex chromosome, or a mosaic.
Here you can have gonadal development
that has a difference, or that the androgen
is either having a different affect.
And the same thing here.
And a host of unclassified other conditions.
So now this is the most recent update of the
umbrella term Intersex.
And for those of you, of course you can't read this,
it's extremely small, the umbrella has spread,
and the umbrella has also included more biomedical
and genetic information.
So, what I showed you on this slide
as unclassified is now captured and classified.
And so the primary cause has to do
with the genetic, I'm sorry, with the biomedical condition,
the genetics, and then there's even a tertiary cause.
So the umbrella has widened in the search
of scientific research and outcomes.
And so, what I wanted to term this talk
as a secondary
topic was that this umbrella can cast shade on your rights.
And so, this umbrella is also creating its own controversy
as it continues to expand.
So I have to first go back to the history
of how we got here with this terminology
and with this ever-inclusive expansion.
And so, one of the most infamous times,
painful times, darkened times, use whatever adjective
you'd like, was in the 1950s under John Mooney.
Who essentially had an Optimal Gender Policy.
The Optimal Gender Policy stated
that gender was malleable, up until about age 18 months.
You could rear your child how you wanted your child
to be raised; and so there's the famous case.
I'll continue to use the word infamous case,
of a set of twins, both born as boys.
One had his phallus removed through a circumcision
that had gone wrong.
And John Money, I'm sorry, I think said Mooney.
John Money had recommended that this child
be raised as a girl.
And so many terrible things then ensued.
And there's an entire book, story, history,
you can look it up; if you have any other questions,
I'm happy to go into that.
But, following
John Money's approach
to the Optimal Gender Policy came an influence of feminism.
Really called out sex and gender, and what really made up
gender roles, and did your sex determine
how you were gonna act and what you were gonna do in life?
What sort of determination that made.
Followed in the 1990s, where outcomes were being reported
that weren't congruent with the way children were assigned.
And of course, calling out what had previously been done
under John Money's Optimal Gender Policy.
And most prominently at that time, in 1998,
was a famous Journal of Clinical Ethics article,
calling for a moratorium on all
gender-normalizing surgery.
And so, following somewhat quickly thereafter
is the 2006 Consensus Statement.
And in 2009, a German networking group came together
and offered up ethical guidelines and recommendations
on how best to improve and implement
this recommendation with the new classification
and attention to multi-disciplinary care.
And a change in focus and management.
And I'll come back to 2013 after this.
So, I made a word cloud of the 2006
and the 2009 recommendations.
Any of you know how a word cloud works?
Things are supposed to bubble up
if there's a prominent theme.
But these were the recommendations.
Raise your hand if you think you can do a really good job
doing shared decision making and outlining all of this.
We all want to do this, but there were
so many recommendations,
and they were all good recommendations,
but they needed improved upon.
So there were efforts to make a validated questionnaire.
To really focus on emotions.
Providing emotional support.
Improving communication, really improving shared
decision making and outlining all of the risks,
benefits, alternatives, burdens.
And focusing on the psycho-social well being.
Focusing on the emotional well being,
and not just the medical aspect.
And of course, following that not only with caregivers
to infants, but following that with,
as the children developed, how they were perceived
with their emotional well being.
And from there,
an attempt to formulate patient decision aids.
So, for shared decision making, we all utilize
patient decision aids, I'm sure that we've all used them.
Does anybody here, raise your hand if
you have used any patient decision aids.
Standardized.
Okay.
So within the Affordable Care Act,
there was a provision for improving shared decision making
and providing funding for patient decision aids.
So, people are still plugging forth with this
and trying to really improve all those recommendations
to bubble up, to really encourage people
to do a better job with all these recommendations,
to respect individual choices.
Meanwhile, let me catch up on here, sorry.
Meanwhile, there continues to be this call for a moratorium.
In 1998, I told you the Journal of Clinical Ethics
called for a moratorium.
In 2013, and this moratorium is
on genital normalizing surgery.
In 2013, the Parliamentary Assembly of the Council of Europe
essentially was putting forth to forbid treatment,
and to honor bodily integrity.
In 2014, the United Nations Human Rights Council
equated any genital normalizing surgery without consent
of the individual as torture.
Within Malta,
in 2015,
it became extremely difficult to,
essentially there was a huge restriction on surgery,
to preserve bodily integrity.
This was followed by the same recommendation
from the European Union Agency for Fundamental Rights.
And in 2017, both Amnesty International
and Human Rights Watch were producing reports
of equating this with human rights violations.
And furthermore, there were legal cases
of advocacy groups coming forward with legal representation
and suing providers for lack of fully informed consent,
in performing these surgeries.
So in 2018, the AMA Council on Ethical
and Judicial Affairs took up this topic.
And they made three significant
but pretty obvious observations.
One is, the evidence is limited.
And the evidence is very contested.
Another is, that these conditions are rare.
And that there is a wide range of these conditions.
Think back to the umbrella that I showed you.
And that research is needed to gain better evidence,
especially long-term outcomes.
And particularly of differing clinical approaches.
So keep that in mind,
in respecting different clinical approaches.
And they went on to say that what's ethically sound
actually depends on each unique patient.
So they recognized parental decision-making authority,
while noting the families need support.
They have different values and interests.
There's different cultural and social values to family units
and that the focus should be not only on medical well being
but on emotional and psycho-social well being.
Of course, encouraging the assent of the child.
The child should be engaged at all points
commensurate with the patient, the child,
or the individual being able to understand
what is happening.
And to preserve the future
of the individual's self determination.
But they don't leave it at that.
They recognize the social complexity
of all of these unique patients.
And they recognize that each choice can either be
an agent of social change or a preserver of the status quo.
So, within each of the differing clinical approaches
there is a social complexity.
And so this
has been undertaken by the law.
This slide is outdated.
I'm sorry, it could go on and say that there are
a total of 11 states, and Washington D.C.
that offers a third gender option.
What I want to point out is,
within many countries there's a third gender option,
that encompasses Intersex and other transgender
and non-binary options.
Either through an option on a birth certificate
or on a passport as diverse,
as placing an X, non-applicable.
As denoting as in India, Nepal, Pakistan and Bangladesh,
an entire third gender.
And again, in Malta, where there's been forbidden treatment.
And I'd like to bring forward
that in the state of California,
there's a Senate Bill 210.
It has been placed on hold, with medical societies
asking for more time for discourse and discussion.
But this Senate Bill 210 is recommending a complete ban
on genital normalizing surgery on infants.
And so, further discussions are taking place.
So while each individual case has social complexity
and the law gets involved,
what this may end up looking like is this.
Raise your hand if anybody likes
to practice medicine like this.
And I have to say that this art is by our prior
Ethics Grand Round speaker, Craig Klugman.
And if any of you recall,
approximately two or three years ago
we also had a Deanna Davis as a Ethics Grand Round speaker.
And she spoke on the legal barriers that present themselves
to the physician/patient relationship, as well.
And how doctors really go about improving
a physician/patient relationship
when they've got legal restrictions.
And as this was referencing, a type of gag rule.
So, from there,
there continues to be a recommendation to improve
and update research through outcomes and evidence.
And I'd like to thank Liz Heitman for pointing this out
to me, that this umbrella continues to expand.
This inclusion continues to expand,
with a call for research on sexual and gender minorities.
So, I've tried to highlight them in purple.
If anybody doesn't know, I later have a slide
of what the Intersex flag looks like.
Trust me when I say it's purple and yellow,
'cause you'll see that theme coming through.
So, the Office of Sexual and Gender Minorities
welcomes research on Intersex individuals,
difference in sex development individuals,
individuals who self identify as non-binary.
But unfortunately, while this expansion of inclusion,
this outreach of inclusion is being brought forward,
here's the enrollment report.
And it's binary, or if you're lucky
you get to be unknown or not reported.
So, we haven't seen the tension reduced
with social change; we haven't seen the tension reduced
with legal change; we have certainly not seen the tension
reduced with an inclusion of scientific research.
Because now you're including
identity and then asking
that identity to fit nicely into a little box.
And so, to quote one of my favorite advocates
that I heard talk,
she said, "I love to fill out forms, when I'm on them."
Nothing is more offensive than a form that you're not on.
So at this point
I want to note that there is
controversy surrounding the name.
We've gone through a lot of names so far.
There's controversy around
an outreach for evidence.
There's also controversy around
including but excluding by identity.
And that these controversies really have not stopped
expanding; I've showed you slide after slide of
recommendations for individualized care
and recommendations for a moratorium.
So what's left is what I can offer,
which is what I think bioethics can do.
So I'd like to bring back my not Edmund Pellegrino,
but my Aristotle.
And this
is from a report that is a 10-year overview
of psychological reports research data
on Intersex.
And the recommendations that come from that
are really to promote individual flourishing
through improving communication.
So what does bioethics do?
We know there's a value judgment.
We know there are dilemmas.
And we come in, we communicate,
and we promote relationships.
We spend time, we engage people.
We know that there are emotions involved.
And we individualize care.
What bioethics can do
includes promoting individual flourishing.
And really give voice to lived experiences.
So here's another report, and this is from
Narrative Bioethics.
And this is both caregivers,
medical providers,
and individuals with Intersex.
And they say, you know, we feel like we were asked
to make a, "Quick and correct decision."
But somewhere where there is no right choice.
"There's no right course of action."
There's this force of inertia
that focuses so much
on the biomedical facts.
And society's not ready for anything different.
And so, those lived experiences need to be told,
and we need to know about those within biomedical ethics.
Furthermore,
it's noted that, for those who choose,
as you remember from the AMA differing clinical approaches,
to be an agent of social change,
that they feel courageous, they feel special,
they feel their children are special.
And so, going forward, how can we improve this?
How can bioethics improve
and try to alleviate this tension
that continues to be ongoing?
Well, I'd like to bring up next month's
Ethics Grand Rounds speaker, Autumn Feister.
And she, along with a prior Grand Rounds speaker,
Lance Wahlert, have formulated
the Queer Bioethics Inventory.
And in the Queer Bioethics Inventory,
it looks at cases that healthcare professionals utilize
for education, and it just brings a light
and sheds a lens on why is it, that LGBT/Intersex
individuals are considered as an outsider?
Marginalized, stigmatized,
because they're gender non-conforming,
they're gender non-binary, they don't fit
into a heteronormative society.
And so, what they have offered is to,
is to distinguish between things that are stigmatizing
and non-stigmatizing content within medical education
and bioethics education.
Two applicable questions that come out of this inventory:
Does the case in question honor diversity?
Are non-normative bodies appreciated
as legitimate, appropriate, and neutral?
So, I think this will probably be the last time I ask,
but raise your hand if any of you
have had Intersex training within your health education
or bioethics education.
Okay.
Did it, raise your hand if it included
diversity as norm.
Okay.
So, bioethics can do better.
Bioethics can normalize these differences.
Bioethics, as Doctor Wahlert says,
can learn from the history and change the narrative,
and weave these cases into education.
So that we become comfortable with the dialogue.
I have never claimed that I have been one
of the smartest urologists that anyone has seen,
but I have taken care of a lot of individuals
with these biomedical conditions, and with Intersex.
And I focus on the individual.
And there is
a wealth of data
to show that these individuals
drop off of care if they don't have sensitive care.
So we need to be comfortable with the dialogue,
and I don't think we're training people
to really have this exchange of how to communicate,
formulate the best interdisciplinary team,
hear the lived experiences, and promote the individual
flourishing of each individual.
So, I'd like to thank Doctor Wahlert as well,
for allowing me to work with him on how
to conceptualize this topic.
So, we spoke about this and we talked about
maybe seeing this as a Venn diagram.
So think back to
the model that I showed you, the individual.
And I asked if anyone knew who she was,
what her biomedical condition was,
and how she identified.
(person sneezes) Bless you.
Now imagine if any one of these circles or bubbles expands
and loses that individual-ness.
Does she become someone with androgen sensitivity syndrome?
Or is she an Intersex advocate?
Or, is the the sweet-spot here
really that she is an individual,
and her individualized story must be heard.
That she did not, nor did her parents
have the best fully-informed consent provided to them.
And so I think what we have to do is really focus
on the individualized care, the person-centered care.
And we can, as I said, I did not set out
to completely relinquish
or resolve all of these controversies,
but I think we can do better
by making this an individualized approach.
Focusing on the human flourishing.
Focusing on the personal identity,
and the right of the individual and the right
of the parents within the family unit.
And so
I include this word cloud
because progress is being made.
This is a current word cloud
of the urology core curriculum
that was provided to be my my colleagues,
to show how this pendulum has shifted.
That says, congratulations on the birth of your baby.
We're gonna make sure we do everything
to ensure that your baby flourishes
and finds a strong gender identity.
We understand that you may choose a gender of rearing.
But congratulations, this is your baby.
And your baby is healthy and going to do great.
And we're gonna do everything we can to honor your rights
and promote the individual flourishing of your baby.
And so this is the Intersex flag,
which I wanted to leave you with.
At this point
what I see are the controversies
are massive; the controversies are medical;
they have to do with identity, with social identity,
social complexity, legal aspects.
But when it comes right down to it,
bioethics can do better
to improve the education
and to inform the research methodology
that embraces individualized care.
Thank you.
(audience applauds)
Yes, Doctor-- -: I'll start.
Dr. Wimberly: Hi Doctor Fine.
(Dr. Fine mumbles)
(Dr. Wimberly laughs)
Dr. Fine: Why parental rights?
Why not parental responsibility is to promote and flourish?
-: I think that's a great term.
For anyone who didn't hear, Doctor Fine asked:
Why the term-- (murmuring)
Hold on one second.
I think we might have the VA piping in.
(murmuring)
Is, hi, is anyone from the VA there?
(murmuring)
Okay, they're gone.
So, Doctor Fine asked: Why not parental--
-: Parental responsibility. -: Responsibility.
Promote flourishing. -: About what you said.
About promoting flourishing.
But then within your word cloud it said parental rights.
-: Right. -: I just wanna know,
could that be replaced with parental responsibilities?
-: I think that's a great replacement.
I think that's a great replacement.
Dr. Fine: About rights, as some of you would know me.
-: So, the recommendation from Doctor Fine
is that this would, the terminology would instead,
which I think the nuance is there in the terms behind it.
The words used within
the word cloud from urology education,
and even within this GAMA
Council on Ethics and Judicial Affairs,
they use the term authority,
which is close to rights.
I do think that's a great recommendation.
We support your parental responsibility
to promote your baby's individual flourishing.
I love it, thank you.
Does anybody else? Yes!
Audience Member: Since you're going to be
on the Ethics Committee at Parkland--
-: Yes. -: Maybe a mission for you?
-: Yes? -: On behalf of endocrinologist
and ask your advocate (mumbles)
to tell you about Parkland.
And already been there for a couple of days.
And when I went over it said,
Girl, Mom's Name, Last Name.
And I said, it should be: Baby.
You know: Baby, Mom's Name, Last Name.
And I said, "We really need to fix this."
It's really confusing. -: Right.
Audience Member: The baby's in pink.
The mom's (mumbles) its says: Welcome Boy.
-: Right. -: Maybe I was having
trouble keeping it gender neutral conversation
because all of the social cues around me
were so confusing. -: Yes.
Audience Member: And I said, you need a chance to baby.
So the next day I go in, and I kid you not,
it says: Boy, Mom's Name, Last Name.
(laughing) I was like, this is,
we're getting farther up the field of where
we need to go. -: Right.
Audience Member: If we can't ake it baby.
And I said, anybody who could,
you can pick a name.
There's people who are XW 123
who can't, you know, as far as identify.
-: Right. -: Why can't you do this?
And they could not, would not, I'm not sure,
change-- -: Okay.
Audience Member: I think it went back to Girl,
to be honest, but,
it would not be just baby.
And it made me, I was so infuriated.
That made me aware of failing
as a whole medical institution.
We can't call somebody-- -: Baby.
And so, for anyone who didn't hear,
there's a story of,
a baby with ambiguous genitalia
being continually given either a binary male or female
depending on which day you present
the request to change.
Part of it is, I agree with you 100%,
the recommendations are to use gender neutral terms.
And to use terms referring to gonads and internal genitalia
and external genitalia, as opposed to something
that is a clitoris or a penis, labia, scrotum,
and to really keep things neutral.
Recognizing the parental responsibility
to promote flourishing.
One of the challenges, like I showed you
with the NIH Inclusion Criteria, has been the E.M.R..
And the E.M.R. likes binaries.
I am so happy to say, the E.M.R. updates are improving
and there are options.
There needs to be another option.
That is the technical fix.
Now, the overarching, how we approach this,
one of the biggest battles that I hear from my colleagues
who are a part of these interdisciplinary teams,
is undoing what has been done when someone
has assigned a sex without it being a provisional assigning.
So, when I've thought about how to change that,
again you come along with the social complexity of
we now are a society that knows the sex
of our baby before the baby is born.
We have gender-reveal parties, and the first question
anybody asks: Is it a boy or a girl?
And so we have to do better education
to really
stop that binary definition
from the moment that there is a child
with ambiguous genitalia, so thank you.
And I will work on that.
John Sadler, yes?
John: Thank Jenna, for a really, really interesting talk.
-: Thank you.
John: The historical lesson of John Money--
-: Money. -: Hoffman's era,
gender assignment surgery decisions
was that we didn't know anything, at least definitive,
actually taken. -: Mm hmm.
John: What can bioethics do
to prevent that historical mistake of it happening again?
-: Great question.
So, the question is,
as I discussed the John Money time,
and I gave it every negative adjective
that I could describe, how can bioethics ensure
we don't repeat that in some way?
Because we don't have outcomes.
We don't have this data
that science keeps overarching
this umbrella and looking for.
One of the ways, I think, that we can go about doing that,
is to change our perspective on the fact
that we have to
promote more individualized care
and change our look for outcomes.
We don't need to have an inclusion criteria
that's binary, and fix people into it,
in the attempt to get all the quantity that we want.
We have to focus on the quality,
and we have to get the personal identities
and the flourishing stories; we have to inform it that way.
As a side note, I included in prior discussions,
people still find that anything that we do
is social experimentation.
I can find you an editorial that says:
Unassigned gender with ambiguous genitalia
is social experimentation.
And I can find you editorials that say:
Assigning gender and trying to fit someone
into a gender identity is social experimentation.
So I think we have to promote the individualized
aspect of care with such a controversial topic.
And I've left that with my colleagues, as well,
from pediatric urology is,
we're not gonna find an algorithm.
We're not going to take this umbrella
and do an if/then, and say this is
what you're baby's gonna be assigned.
Or, this is how this individual is going to identify.
It's going to be individualized, and it has to be
woven into education to normalize
that these differences exist.
I hope that answers your question.
Yes?
(audience member murmuring)
I'm sorry, I couldn't hear you.
Audience Member: What advice could you give me
or a student asked (mumbles)
-: So the question is: What advice can anyone--
(audience member murmurs)
Provide to really help their baby flourish?
So, one of the aspects is the prior
way of looking at this was: Well, all babies
that have normal genitalia must be,
must be happy, and that was wrong.
That was the atrocities that we talked about.
So it's not that.
It's finding the values that the family has,
the support, the social, the cultural aspects of that family
and I don't want to use the word arming them but,
promoting ways that they can best handle
how they're going to work
with their differing clinical approach.
In some instances, there's going to be individuals who
have surgery, and in some individuals
there's not going to be surgery.
But how to share that information, not only with the child,
but with the loved ones and the caregivers,
and really promote the well being of that family unit,
as well as the child, is what I think can be
the best way to offer what should be done
or what would be the best way to promote the parents.
Promoting the baby's self identity,
it's future self determination.
Does that answer your question?
(laughs) Go ahead.
(audience member mumbling)
Right, right.
And so, throughout all of the ages.
I'll go back to this.
There's really how to include relationships
and relationships that allow for communication and trust.
The information that you give to the child
and that you give to the caregivers.
It's the one way does not fit all;
so it's very individualized.
And maybe that's why I can't answer it perfectly for you.
(laughs)
Any other questions?
Yes, Liz?
Liz: I don't know if you wanna answer this,
and if you don't, you don't have to.
-: Sure. -: It is not
in response to but motivated by Doctor Fine's question.
The child in Austin who's parents are divorcing
and seeking custody to allow the child
to either be a transgender girl
or be a boy, depending on which family member
has responsibility.
The Governor of Texas has weighed in on this
and seems to have a formal statement about it
that is apparently kind of (mumbles).
That would be a good question of parental rights
in the sense of freedom from, not freedom to or right to.
Would some of the statements about,
thou shalt not do surgery. -: Right.
Liz: And in this case, what looks like...
a coming statement from the government of the state of Texas
that this will or will not be allowed.
In a broadened this,
how would you respond in the moment
to the responsibility of the state?
Both in terms of child protective services
and others further on up the line in authority,
to say the parents are not acting in the best interest
of the child and the state has a better idea?
-: Thank you, that's a great question.
Doctor Heitman's question has to do with,
if I can summarize,
how I feel
about the government
intervening in a current case,
with regard to a child
being able to or not being able to transition,
and the parental aspect of each parent
has a differing opinion.
So I put this slide up, 'cause that's how I feel.
I have not been a fan of
the law taking over ethical dilemmas.
I do
trust that there are times that
we need to protect peoples' rights and civil rights.
I do think that,
the last I had left this case,
there was a conclusion that I thought was a good conclusion
which was, you know,
this is the equal parents' responsibility.
Here we go back to responsibility.
I don't think it needed to continue up the
legal governmental ladder in any way shape or form,
because I feel like this is where this is gonna go.
I picture that as being me or one of my colleagues,
and I picture that as Governor Abbott, with his hand.
And I don't think that's a promoting physician/patient
relationship, promoting child flourishing.
There are certainly parents who
will need to have protective services involved.
When it comes down to an ethical/medical dilemma,
I don't think that it needs
to go up the ladder at this point.
I think it's up to the parents, and the parents'
responsibilities to come to an agreement.
But thank you for the intriguing questions.
(Dr. Heitman mumbles)
Correct.
And I guess,
if that's, and I apologize if that's overly
aggressive answer of how I feel about the law taking over,
but it's the,
it's my honest answer.
And trying to promote this informed consent policy
and really preserve an individual's right
to self determination,
sort of, get the law out of the picture, if able.
Yes?
(audience member mumbles)
Hi. (audience member mumbles)
Yes. (audience member mumbles)
(audience member mumbling)
Yes. (audience member mumbles)
(audience member mumbling)
Audience Member: We get some sort of,
similar approach where (mumbles)
we think that girls who have this condition end up
to be basically this gender for females (mumbles)
This is basically intervening if (mumbles)
These sort of things would basically prevent
this kind of confusion (mumbles)
But now hearing about the concept of this individual right--
-: Right. -: There is really no way
for me as a pediatric, as a pediatrician
hearing from that child when they grow up.
Because there is no 100% certainty
that this person is not going to have,
for example a (mumbles) -: Yes.
Audience Member: And then would basically
not by having the decision (mumbles)
At some point we are faced with those challenges (mumbles)
(mumbling) If you don't intervene,
it's also a problem.
It's always kind of like, this dilemma.
I'm not saying (mumbles)
This is something that, again,
(mumbles) need individualized care in this question.
But where do we draw the line where, hey,
this is not a person who is giving due consent?
This is (mumbles) and a medical decision (mumbles).
-: So I think that's a great question.
The question had to do with, and I brought back up
the slide congenital adrenal hyperplasia
is the most common form of DSD.
And it is the most dangerous, as well,
because it can be deadly; it's a salt-wasting condition.
So that is our one real medical emergency,
ensuring that there is steroid replacement.
In a prior life of this presentation,
I have a picture of a very, very viralized
XX congenital adrenal hyperplasia
baby that the parents were,
very well-informed consent, were choosing
to raise the child as a male.
'Cause it looked so viralized.
And so, the question or comment had to do with
how do we really even know what's right?
Because for the most part,
these individuals will identify as female.
But we don't know, right?
And so, I think it's just honesty
and disclosure and information and support,
throughout the lifetime, because there are individuals
that are being raised as male.
Now, of course,
there's going to be difficulties,
there's not going to be a fertility option.
This information commensurate with age and capacity
needs to take place.
But for the most part,
this is a parental responsibility
to promote that baby's flourishing.
And so, it's not about us the provider;
it's about the parents.
And ultimately the individual.
So thank you, great question.
And I think that's probably all.
Any other questions?
Thank you all so much.
(audience applauds)