EBS: 206
9/18/2014
Lesbian, Gay, Bisexual,
Transgendered,
Queer/Questioning
(LGBTQ) Clients in Genetic
Counseling:
Awkward Questions?
Complex Answers?
Let’s Start the Discussion
Robin Bennett, Bradley Rolf,
Robert Pilarski, June Peters,
Susan Silber, Luba Djurdjinovic
Agenda and Conflict of Interest Disclosures
 “Introductions,” Robin Bennett, MS, LGC, ScD Hon
 “LGBTQ Background Information,” Bradley Rolf, MS, LGC
 “Diversity in the LGBTQ Experience,” Robert Pilarski, MS,
LGC, MSW
 “LGBTQ Family Issues, "June Peters, MS
 “Legal Context for your LGBTQ Clients,” Susan Silber, Esq
 “Family History and Counseling Issues,” Robin Bennett,
Luba Djurdjinovic
 Audience and Panel Discussion
In relationship to this presentation, we have no conflicts of interest
Rules and Objectives
 Session not recorded but handouts available
 What happens in New Orleans, stays in New Orleans
 Identify at least one practice change to make to your
genetic counseling practice that would make your practice
setting more client-centered to LGBTQ issues
 List at least three issues that a LGBTQ client/couple may
encounter in your genetic counseling practice setting
 Produce a consensus pedigree documenting appropriate
genetic information with and without representation of
LGBTQ issues
1
LGBTQ
Background Information
Bradley Rolf, MS, LGC
What is LGBTQ?
Acronym that represents the spectrum of gender identity and
sexual orientation
Lesbian
Gay
Bisexual
Transgender
Queer
Sexual orientations
Gender identities
Gender Terminology
 Gender identity
> A component of an individual’s self-perception
> Formation of an individual’s gender identity can happen at any
age - childhood through adulthood
> Gender identity can change throughout an individual’s life
 Gender expression
> The way in which an individual communicates gender
— Clothing
— Haircut
— Voice
— Mannerisms
— Behavior
2
Gender Terminology
 Cisgender (or gender normative)
> A gender identity that corresponds to an individual’s sex assigned at
birth
 Transgender
> A gender identity that does not correspond to an individual’s sex
assigned at birth
> This term is commonly used by individuals that have gender
identities that do not follow typical gender norms
 Sexual orientation
> A term that describes the people that an individual is sexually
attracted to
Lesbian Patients
 A sexual identity
 Individuals that identify as women (gender identity) and that
are sexually attracted to other women (sexual orientation)
Gay Patients
 A sexual identity
 Individuals that identify as men (gender identity) and that
are sexually attracted to other men (sexual orientation)
3
Bisexual Patients
 A sexual identity
 Individuals that are attracted to both men and women
(sexual identity)
 This term can be applied to any gender identity
 Not the same as gender neutral, pangender, etc.
Transgender Patients
 A gender identity
 Transgender
> A gender identity that differs from the one assigned to an
individual at birth
 Trans man
> An individual whose sex assigned at birth is woman but
who identifies as a man
 Trans woman
> An individual whose sex assigned at birth is man but
who identifies as a woman
Queer Patients
 A gender identity
 Queer is different
 A “catch all” term for all identities that fall outside of the
other labels
> Gender neutral
> Nonconforming
> Gender queer
4
History of Gender
 Gender as a static binary
> Male
> Female
 Gender was determined by sex
> Men are masculine
> Women are feminine
 Gender roles and stereotypes
> Aptitudes and interests
> Characteristics and mannerisms
> Role in society
Present Day Gender
 No longer just a binary
 Evolving gender roles
 Gender as a means of self-expression
Separating Sex and Gender
Sex and gender are NOT interchangeable terms
Sex
 Sex is a biological descriptor
 Sex is assigned at birth based
on physical attributes:
> sex chromosomes
> gonads
> sex hormones
> internal reproductive
structures
> external genitalia
Gender
 Gender is a personal identity
 Gender is a complex
interrelationship between:
> physical traits
> an internal sense of self as
male, female, both or neither
> outward presentations and
behaviors related to that
perception
5
Gender Identity and Sexual Orientation
Gender Spectrum
Cisgender
Straight
Gay
Lesbian
Bisexual
Asexual
Transgender
Straight
Gay
Lesbian
Bisexual
Asexual
Gender
Neutral,
Agender, Other
Straight
Gay
Lesbian
Bisexual
Asexual
Important Points
 Gender identity is self-directed
 You cannot always tell by looking
 Ask - don’t assume
 Gender identity and gender expression can change
throughout an individual’s life
The Spectrum of Gender Identity
 There are many labels that individuals choose to describe
their gender identity
 Facebook currently offers members in the USA 50 different
labels for gender identity
> Members in the UK have 71 different labels
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50 Facebook Gender Identities












Agender
Androgyne
Androgynes
Androgynous
Bigender
Cis
Cis Female
Cis Male
Cis Man
Cis Woman
Cisgender
Cisgender
Female
 Cisgender Male
 Cisgender Man
 Cisgender
Woman
 Female to Male
 FTM
 Gender Fluid
 Gender
Nonconforming
 Gender
Questioning
 Gender Variant
 Genderqueer
 Intersex
 Male to Female
 MTF
 Neither
 Neutrois















Non-binary
Other
Pangender
Trans
Trans Female
Trans Male
Trans Man
Trans Person
Trans*Female
Trans*Male
Trans*Man
Trans*Person
Trans*Woman
Transexual
Transexual
Female
 Transexual Male
 Transexual Man
 Transexual
Person
 Transexual
Woman
 Transgender
Female
 Transgender
Person
 Transmasculine
 Two-spirit
21 Additional Facebook Gender Identities













Asexual
Female to male trans man
Female to male transgender man
Female to male transsexual man
F2M
Gender neutral
Hermaphrodite
Intersex man
Intersex person
Intersex woman
Male to female trans woman
Male to female transgender woman
Male to female transsexual woman








Man
M2F
Polygender
T* man
T* woman
Two* person
Two-spirit person
Woman
Issues Faced by the Transgender Community
 Transitioning
> The outward change from one gender to another
> Social transition: non-permanent changes in clothing, hairstyle,
name and/or pronouns
> Medical transition: changes that require the use of medicines such
as hormone “blockers” or cross hormones, and surgery to add or
remove gender-related physical traits
 Passing
 Hormone therapy
 Gender affirming surgery
 Trans people of color – being a minority within a minority
 Gender pronouns
 Relationships
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Gender Pronouns
 Preferred gender pronouns
> He/him/his
> She/her/hers
> They/them/their
> Zie/hir
> Name only (no pronouns)
 “It” is NOT a pronoun and should never be used to refer to
a person
LGBTQ Relationships
 Married (legally recognized)
 Married (not legally recognized)
 Partnered
 Husband, wife, partner, other
What are we really talking about?
 Relating to patients
 Creating an environment that is comfortable for all patients
 Addressing relevant issues in a sensitive and
compassionate manner
 Recognizing that gender issues affect everyone
8
Approaching LGBTQ Patients
 Introductions
> Name, preferred gender pronoun
> Who have you brought with you?
— A safe way of eliciting relationships without assuming
 Contracting
> What are your concerns about today’s visit?
 Safe questions about gender and relationships
> What is your preferred gender pronoun?
> How do you identify?
> Are you in a relationship?
> Are you partnered?
> Who is your partner?
Diversity in the LGBTQ
Experience
Robert Pilarski, MS, LGC, MSW
One Size Does Not Fit All!
 Like any group of people that are categorized together,
members of LGBTQ community vary significantly, and
understanding “group” characteristics is only a starting
point to understanding the individual.
 Your patient will no doubt be impacted by their LGBTQ
experience, but what this means can differ dramatically
from person to person.
 And like anyone else, they will also differ based on many
other variables, such as socioeconomic background, politic
beliefs, family and life experiences, personality type, etc.
9
Variables in the LGBTQ Experience
Age/Generation
Region of the country; Rural vs. Urban
Race/culture
Religion
“Out-ness”
Age/Generation
 The experience of being LGBTQ has changed
dramatically over the past several generations:
> Your older clients grew up in an era when:
— There were no positive role models for LGBTQ people
— Discrimination on the basis of sexual orientation was widely accepted
— Being outed generally meant loss of job, friends, family and children
— Parenting was not an option for same sex couples
— Socialization was done through an underground network of friends, bars
— Police raids on bars and clubs and arrest of patrons was common
— “Gay bashing” was common and accepted
 People who experienced this may still be guarded
about their personal lives despite being “out”.
Age/Generation (continued)
 The Stonewall Bar riots (the unofficial start of the
gay rights era in 1969), feminism and AIDs
ushered in an era when many LGBTQ people
became activists and even radicalized:
—Being accepted as LGBTQ became something that a
person fought for
—This identity took a strong role in peoples’ lives
10
Age/Generation (continued)
 We now live in an era when LGBTQ youth:
> Can find positive role models in TV, movies, sports, the
arts, teachers, etc.
> Can access information and support on the internet.
> May have access to safe spaces at school, supportive
allies and organizations
> Can find support in religious leaders, teachers, politicians
> Face far less legal discrimination
> Increasingly have domestic partner/marriage rights
> Have increasing options for adoption and procreation.
Age/Generation (continued)
 For many growing up today, sexual orientation is
no longer the major variable in how one is viewed:
> Friends “sort” by common interests rather than sexual
orientation
> Exclusively “gay” bars are fewer and fewer as people
tend to mix less exclusively
> “Gay” travel destinations are changing/adapting
Region of Country/Urban vs Rural
 Attitudes toward LGBTQ people (and thus their life
experiences) differ significantly based on the
liberal vs conservative climate of the area they
grow up in.
 The Northeast and West coast tend to be more
liberal than other areas of the country.
 Larger cities tend to be more accepting than small.
 However pockets of liberal/accepting communities
exist even in conservative regions, and vice versa.
11
Race/Culture
 Racial and cultural groups can differ significantly in
areas that impact a person’s experiences growing
up as LGBTQ:
> Added invisibility of sexual minorities
> Emphasis on family ties
> Emphasis on obedience to parents
> Emphasis on “saving face”, honoring the family
> Role of (conservative) religious groups in the community
> Role of machismo
 LGBTQ people of color may also face covert
racism within their the LGBTQ community.
Religion
 Religious denominations vary dramatically in their
degree of LGBTQ support vs. condemnation.
> Many now have supportive sub-groups.
> Metropolitan Community Church (MCC)
 The religion one was born into and the degree of
religiousness of one’s family can have a significant
impact.
 Many LGBTQ people have to negotiate for
themselves how they fit into (or don’t) the religion
they were raised in. Leaving one’s religion can be
another traumatic (or empowering) experience.
Family of Origin
 LGBTQ people are one of the few minorities born into
families that do not share their minority status, and who
thus risk rejection by their own families.
 Rejection by family is an incredibly invalidating experience
to be overcome.
 Some LGBTQ people end up creating “families of choice”
to support and nurture them, in place of the “family of
origin” that rejected them.
 Others are born into families that accept and support them.
 The degree of support vs. rejection a person has faced can
have a strong impact on their trust in others to accept their
orientation.
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“Out-ness”
 “Coming out” is not a one-time event; it is an
ongoing (sometimes lifelong) process that often
requires negotiation for each new experience.
 People vary re: their place on the “coming out”
spectrum”:
> To oneself > To family/friends > Living openly
 A person may be in different places on the
continuum in different aspects of their life.
 Some people who are actively “coming out” may
take an almost militant or “over the top” approach.
LGBTQ Family Issues
June A. Peters- Clinical
Genetics Branch, NCI, NIH
[email protected]
Susan Silber- Family law
private practice
[email protected]
Healthy Families
13
What defines a Family?
• Structure
• Residence
• Shared Resources
• Blood ties
• Legal ties
• Commitment and love
• Culture/social
connection
• Communications
• Parenting/nurturing/
socialization of children
• Physical care of all
group members
• Addition of new
members
– Procreation
– Adoption
– Affiliation
Family of Origin vs. Family of Choice
Family Social Assessment via the CEGRM:
Friends, neighbors, co-workers matter
Share health information
“Best friend”
? spouse
Co-worker Friend
Disseminator
Block
er
Tangible support
Emotional Support
Religion,spirtuality
14
Legal Context for Your
LGBTQ Clients
Susan Silber, Esq.
[email protected]
Main Points
1. Legal recognition of marriage and
family - Same-sex marriage is not
recognized in the majority of states
2. Parent-child relationship varies from
state-to-state
3. Access to relevant genetic information
in cases of ART and surrogacy
Legal Recognition of Marriage and Family
>Wide chasm between self-recognition
and legal recognition
>State laws rule
>Legal status is in flux
>Recent History
—DOMA
—Prop 8
15
Parent-Children Relationships
Non-biological and non-adoptive parent may
achieve full status of legal parent via:
>Adoption
—Joint and second-parent adoptions
>Court parentage orders (i.e., Paternity)
—Surrogacy
—Marital presumption
—Holding out
—State statute
—Consent to inseminate
>Finding of de facto or psychological parenthood
Parent-Children Relationships
Non-biological and non-adoptive parent may
achieve full status of legal parent via:
>Adoption
—Joint and second-parent adoptions
>Court parentage orders (i.e., Paternity)
—Surrogacy
—Marital presumption
—Holding out
—State statute
—Consent to inseminate
>Finding of de facto or psychological parenthood
Parentage, continued
>Legal parent status is critical to the issue of who
can consent to medical procedures and have
access to medical records under HIPAA
>There are now many innovative ways of LGBTQ
couples establishing parentage, e.g., 3 parents
on the birth certificate, but…
>A birth certificate naming parents is not equal to
a court order
—Another state must honor the court order
>Genetic counselors should ask whom the child
would identify as their parent
16
ART and Surrogacy in LGBTQ clients
>Since many LGBTQ parents have children
through ART, it is critical to access relevant
family and medical histories of all parties
>But…many LGBTQ people are estranged from
their families or have poor communications
>Attorney roles- Ensure genetic information is
provided, documented and preserved through
—Egg and sperm donor contracts
—Surrogacy contracts
—Fertility bank documentation
ART and Surrogacy in LGBTQ clients
>Since many LGBTQ parents have children
through ART, it is critical to access relevant
family and medical histories of all parties
>But…many LGBTQ people are estranged from
their families or have poor communications
>Attorney roles- Ensure genetic information is
provided, documented and preserved through
—Egg and sperm donor contracts
—Surrogacy contracts
—Fertility bank documentation
Summary
Legal Context for LGBTQ Families
>State and federal laws are in flux regarding legal
recognition of LGBTQ marriages, families, and
parent-child relationships
>Attorneys can help with
—Pre-nuptial agreements, marriage and divorce
contracts
—Parentage documents
—Birth certificates and Second parent adoptions
—ART and Surrogacy
—Everything else that other families need
17
Family History and
Counseling Issues
Achieving a culturally responsive,
client –centered genetic
counseling experience for our
LGBTQ patients
Robin Bennett, Luba Djurdjinovic
Our LBGTQ patient and family
Survey of genetic counselors (n=213)
 90% have counseled a patient that identified as LGBTQ
> 7% reported that they were not sure
 89% felt comfortable or very comfortable counseling
patients LGBTQ
 44% agreed or strongly agreed they lacked experience
working as a genetic counselor with LGBTQ population
 25% worried about offending/saying the wrong thing
 Counseling approach
> 71% reported that their genetic counseling approach did not differ
> 15% reporting that it did and
> 14% unsure
Glessner H.D. et al JGC 2012
Creating a “safe environment”
 Contracting and family history taking
> Establish rapport and trust
 Ask without assumption
 Open-ended questions
 Recognize that person is asking silently “Can I come out?”
with one person after another, including you!
 Ask who is in the room? Inquire of the person and/or the
patient, why is it important for that person to be present
today
 “Are you in a relationship?” “Do you have a partner?”
 Afraid others will be uncomfortable
18
Approaches to family history and GC issues
 LGBTQ person may have been rejected by one or more
relatives in family of origin (currently or in the past)
 “Tell me about the structure of your family”?
 Could be difficult to obtain medical records confirming
diagnosis
 Could be difficult to talk to other relatives about genetic
testing, or sharing outcomes of genetic testing/counseling
Documentation of family health history/pedigree
 Addressed in NSGC Standardized Pedigree Nomenclature
> Bennett et al., JGC, 2008
 A diamond can be used to represent transgender,
or a person who does not identify as “male” or “female”
 Same sex partners can be noted on the pedigree
 Recommend that the male or female symbols
(square/circle) define the phenotypic gender, with the
gender at birth noted
Pedigree line definitions
1. relationship line
2. sibship line
2. Line of descent
4. individual’s line
Bennett et al., J Genet Couns 2008
19
Adoption
Adapted from Bennett et al., J Genet Couns 2008
ART symbols
D
D
P
P
D
D
D
P
D
P
Adapted from Bennett et al., J Genet Couns 2008
Example: Reciprocal IVF
D
Anonymous
or
Known
4y
5y
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Example: Trans man with female partner
D
D
P
female
transition
male
female
transition
male
P
Documentation in the EMR
 Not aware of any standard specifically addressing
this
 Remember that with meaningful use the patient is
encouraged to view own medical record
 Pedigree may be shared with family
 You should involved patient in the documentation
Increasing our cultural competency with LGBTQ Clients
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10-Point approach to cultural competence
COUNSELING
 Client–Centered
 Open
 Unconditional positive regard
 Non-directive
 Self-awareness
 Empathy
 Listen
 Inclusive
 Non-Verbal
 Genuine
Steinberg Warren N, Wilson P.L Perspectives Q3 2013 pp 6-7
10 point approach
Assuring a dynamic experience for patient and counselor
 Central to the genetic counseling experience is the
emergence of an alliance between counselor and
patient
 Maintained and enhanced through
Self awareness
Confidentiality and boundaries
Patient Autonomy
Listening
Empathy
Self assessment is an ongoing process
 Periodic reflection on our experiences with LGBT
individuals in the community and in our clinical
settings.
 Our attitudes are fluid as we are influenced by
experience, societal attitudes about sexuality and
gender roles.
The Fenway Institute 2009
Lesley Chenoweth, Donna McAuliffe 2005
22
Self assessment
How do I react (internally and externally)
when I learn someone is Gay? Lesbian?
Bisexual? Transgender?
How do I react (internally and externally)
when someone expresses their gender in a
non-traditional way?
The Fenway Institute 2009
Glessner et al, JGC 2012
Self assessment
Do I believe a relationship between a woman
and man is “better” and why?
What cultural or religious messages about
LGBTQ relationships and lifestyles have I
heard in my personal or professional life?
The Fenway Institute 2009
Glessner et al, JGC 2012
Self assessment
What have I read or what can I read that will
help me provide more inclusive, sensitive
care to LGBTQ patients?
The Fenway Institute 2009
Glessner et al, JGC 2012
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Recommendations- J Genet Couns
 Medically inclusive forms are important
 Determining whether a genetic counselor
can relate to a person who identifies as
LGBTQ is based more on the relationship
established during the session and less on
external symbols in the office
 The presence of LGBTQ-friendly symbols
increases comfort when disclosing one’s
orientation
Erin VandenLangenberg et al J Genet Couns 2012
Recommendations- J Genet Couns
 Inclusion of the patient’s partner is important
and best done by encouraging active
participation in the session.
 When patients disclose their orientation,
they expect to be treated like any other
patient
 When a provider inquires about orientation,
it should be done in a safe and appropriate
way
Erin VandenLangenberg et al J Genet Couns 2012
Take the first steps
 “Relationship status” instead of “marital status”
 Provide a “partner” option along with “spouse” or
“husband/wife”
 Add a “transgender” option to the male/female
check boxes
 Review your patient resources
 Consider joining the GLMA (Gay Lesbian Medical
Association) Provider Directory (www.glma.org)
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www.lgbtfamilyhealthhistory.org
Ferre Institute and Genetic Alliance (2008-2009)
 463 Family Health History Toolkits (2 brochure)s
distribute
 Follow survey:
 71% stated that they could see the need for
collecting family health history
 94% said the booklets made it simple to collect
and record health information
 68% said the pictures and stories in booklets were
a welcoming sign of openness to LGBTQ families.
Toolkits
 88% said booklets helped them understand how
genetics and lifestyle are both important factors for
family health history
 40% that researching their family health history
raised questions that needed additional
information
 29% brought this information to their healthcare
provider
 28% considered taking these questions to a
genetic counselor
25
Suggested Exercise
Consider the following scenarios:
 A 30 y.o. transman with a BRCA2 mutation who has undergone
hormone therapy and is with his 28 y.o. female partner
 A lesbian couple ages 35 and 30 seeking preconception counseling
 A lesbian couple with a fetus with an abnormal ultrasound finding
Consider what their experience would be in your clinic:
1. Why would it be a comfortable and/or positive experience for each
patient?
2. Why would it be an uncomfortable and/or difficult experience?
3. What could be done to make genetic counseling work better for each
patient?
Adapted from Linwood Lewis (2010), In Genetic Counseling Practice: Advanced Concepts and
Skills, ed. LeRoy, McCarthy Veach, Bartels
Observe, ask and understand
If slip up, apologize
Awkward Questions?
Complex Answers?
Let’s Start the Discussion…
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