HGEN 710
Genetic Counseling Methods
Fall 2008 Syllabus
Andrea A. Sellers, M.S.*
779-4928 ext. 237
(864) 907-4627 (cell)
[email protected]
Thursdays, 8:30 a.m. – 11:30 a.m.
LL Conference Room A
* Janice Edwards, MS, will coordinate the course while I am on maternity leave. Her contact information is as
follows: 779-4928 ext. 227, [email protected]
The course objectives for HGEN 710 are to develop the student’s ability to:
1.
Plan counseling agendas under various circumstances to optimize case management.
2.
To prepare for professional employment and consider avenues for career development.
3.
To understand mechanisms for billing and reimbursement as well as other administrative
aspects of genetic services including compliance issues and HIPPA.
4.
To provide cross-cultural counseling including where language or other communication
barriers require counseling through interpreters.
5.
To appreciate the genetic counselor’s role in multiple specialty settings such as public
health, oncology, specialty clinics, etc.
6.
To develop the skill of case presentation to other healthcare professionals.
7.
To appreciate the role of local, regional and national support groups in patient coping as
well as the challenges of establishing and maintaining an active support group.
8.
To meet the needs of patients experiencing perinatal grief and to help them work
through the normal emotions surrounding pregnancy/infant loss.
9.
To prepare and provide appropriate educational offerings to community and health care
groups.
10.
To critique cases, both as an observer and in self-analysis, focusing on psychosocial
content and case management.
HGEN 710 class schedule:
August 21, 2008
Orientation
Developing Prenatal Counseling Outlines
(Outline to be constructed during class)
August 22, 2008
Developing Cancer Counseling Outlines
(Outline to be constructed during class)
Karen Brooks, MS
8:00-9:00 a.m.
August 28, 2008*
Administrative Aspects of Genetic
Services: Billing, Reimbursement,
Insurance, Compliance and HIPPA
*prenatal outlines due
September 4, 2008*
Developing Pediatric Counseling Outlines
(Outline to be constructed during class-see “Assignments” for how to prepare)
Ken Corning, MS
* cancer outlines due
September 11, 2008*
The Job Hunt: Interviewing Tips and New
Mainstream Roles for Genetic Counselors
Guest Speaker: Alicia Bervine,
USC Career Center
www.sc.edu/career
*pediatric outlines due
September 18, 2008*
Counseling Parents re: Anomaly on U/S
Role Play (outline constructed during class)
*interview assignment due
*curriculum vitae due
September 25, 2008*
October 2, 2008
October 9, 2008*
Counseling/interview strategies for the uncommon
patient: working with patients with mental
retardation, mental illness, and teens
Guest Lecturers: Maryann Perry (mom)
& Valerie Perry (daughter)
* fact sheet on Finucane book due
Working with Interpreters
Role Play - bring flipbooks to class!
Guest speakers: Hispanic Connection
Teratogens I – Understanding epidemiology, animal
data, and interpretation of data
Guest Speaker: Bob Best, PhD
*annotated bibliography due
October 16, 2008*
Teratogens II – Focus on psychosocial
counseling issues for teratogen sessions
and Role Play
(outline to be constructed during class)
* Teaching assignment due
October 23, 2008
October 30, 2008*
No Class--NSGC
Cross Cultural Counseling Student presentations
*cross-cultural fact sheet due
November 6, 2008
Decision Making After an Abnormal Prenatal Dx:
Choosing to Terminate an Affected Pregnancy
Guest Speaker: Vicki Vincent, MS
November 13, 2008
Continuing a Pregnancy with a Lethal Condition
Perinatal Hospice
Guest Speaker: Tammy Tate, Licensed Grief Counselor
Co-Founder Carolina Perinatal Support Network
November 20, 2008
Open Topic- Student Presentations
November 27, 2008
No Class—Happy Thanksgiving!
December 4, 2008*
Support Groups...How to Get Them
Started and How to Keep Them Going!
Guest speaker: Gail Stapleton, MS
GGC - Greenville
*support group presentation due
December 11, 2008
Genetic Counseling Video Self-Critique Due
LEARNING EXPERIENCES
Case presentation and discussion, guest speakers, role playing, reading and written
assignments as well as oral presentations will constitute the major tools of learning.
ATTENDANCE POLICY
Attendance is mandatory for all assigned Thursday classes. Missing more than one Thursday
class for any reason (excused or unexcused) will result in a reduction in the student’s final
letter grade by one full letter grade.
TEXTBOOK
You may wish to purchase the following text. Copies are available in the genetic counseling
suite as loaners, but many students have opted to have their own copy for future reference.
Working with Women who have Mental Retardation (1998). B Finucane
Since this text was the result of a JEMF grant by NSGC, it is only available through NSGC. See
the website www.nsgc.org/resources/list_orderform.asp Cost is $10.50.
GRADING
20
20
20
20
10
10
20
20
20
20
20
20
pts
pts
pts
pts
pts
pts
pts
pts
pts
pts
pts
pts
Prenatal/Preconception Counseling Outlines
Cancer Counseling Outlines
Pediatric Counseling Outlines
Teratogen Annotated Bibliography
Interview with a Genetic Counselor
Curriculum Vitae
Cross-Cultural Assignment
Teaching Assignment
Fact sheet for Finucane book
Support Group Presentation/Assignment
Open Topic Presentation
Genetic Counseling Video Self-Critique
220 pts*
Total
100-90% = A
89-80% = B
79-70% = C
69-60% = D
<60 = F
**Please note, late assignments will be penalized by 1.5 points for each day they are late. Assignments
will not be accepted more than two days after they are due.
ASSIGNMENTS
Due August 28th
1. Prenatal Counseling Outlines
Although genetic counselors know that there is no such thing as a "routine" session, it is often
preferable to have a mental (if not written) outline of the basic information that needs to be
discussed in a given session. This assignment consists of creating counseling outlines for a
particular session using a detailed format. You may need to search the literature (not ask
another counselor) in order to prepare these outlines. We will prepare and discuss one case in
class. You will be broken into groups and asked to search out information that we will then
compile. You do not need to prepare ahead of time for our case, but see the description listed
below in case you are curious.
Together In Class:
Pt is 37 y/o primagravida at 18 weeks gestation in a twin pregnancy. The
pregnancy was conceived via IVF and ICSI. Family history shows a
maternal uncle with hemochromatosis. The father of the baby was born
with cleft palate and his mother has schizophrenia. He also reports a
cousin that is “slow.” The couple is Ashkenazi Jewish. Pregnancy and
family history otherwise noncontributory.
Assignment (to be turned in the following week after class):
i. CVS
A 33 year-old patient whose first-trimester ultrasound scan reveals a nuchal
translucency of 5mm at 11.5 weeks’ gestation. Her first trimester serum screen shows
PAPP-A of 0.69 MoM and freeB-hCG of 2.23 with an increased risk of Down syndrome of
1 in 19. Family history noncontributory.
ii. Couple with two consecutive first-trimester miscarriages (8 weeks, 10 weeks) and a
second trimester loss at 15 weeks. History of a maternal aunt with a stillbirth and a
maternal grandmother with a deep vein thrombosis at 51.
2. Cancer Counseling Outlines
Due September 4th
In class we will develop an outline for an unaffected 40 year old female with a family history of
breast cancer. Please come prepared to contribute!
**Your assignment will be handed out during class.
3. Pediatric Counseling Outlines
Due September 11th
In class we will develop an outline for a 3 year old male child referred for "speech delay and
autistic-like behaviors." Come prepared with your ideas on how to approach this session. What
are some things on our list of differentials? (HINT: I want to know your list of differentials,
please don't give me the London Dysmorphology list!) What specific questions will we want to
ask this family? What things will we want the physician to look for on physical examination and
why? What bloodwork may we consider? etc.....
Your after class assignment will be as follows:
1. Prepare an outline of a session where a newborn is referred to you for hypotonia. In
addition to the outline, write the follow-up letter to this family. (More on this letter in class)
2. Prepare an outline only for the referral of an 8 month old female with unilateral microtia.
This family has recently moved to the area, you have no further information.
I would like your outlines to be fairly detailed. I don't want you to just "ask about
development" -- you have the child's age, ask appropriate developmental questions. I want to
know very specifically what questions you will ask and what language you will use to explain
autosomal recessive inheritance to a lay person. Include dialogue wherever possible! - instead
of “ask patient about other people with café-au-lait spots/neurofibromas”, tell me what you
would really say “anyone else in the family with similar birth marks, freckles, moles, bumps,
lumps, etc”. This is designed to get you thinking in terms that you might really use during a
session.
4. New Mainstream Interview Assignment
Due September 18th
You are asked to identify, make contact and interview a genetic counselor who is currently
working in what is considered a nontraditional work setting or job. Historically, genetic
counselors have mostly been employed in university-affiliated hospitals within the fields of
pediatrics, obstetrics, or oncology. The individual that you choose to interview can be located
anywhere in the United States (for that matter, he/she can live anywhere in the world). You
should ask the following basic questions from the interviewee:
1. How did he/she get the position? Was the funding already in place or
did the individual have to create the job?
2. Is the position grant-funded or is it fully funded by the institution/
company
3. How did the GC hear about the position?
4. How does the GC keep current with the rest of the professional literature and yet
keep abreast of the developments within his/her specific area?
5. Has the GC felt a certain amount of isolation within the field?
Is this the GC’s first job? How long has he/she been in the job?
6. Would this particular position be a good one for a recent graduate? If
so, in what ways is it positive or negative?
7. What are the major advantages of the job?
8. What are the major disadvantages or drawbacks of the position?
9. Are there opportunities for networking with other genetic counselors, and if so, what
are the most effective strategies that you employ?
10. Who have been the most influential professionals directly or indirectly involved in
your landing this current position? Have these individuals in question continued to
be mentors within the actual work setting?
The above only represents some of the questions that you should ask of the interviewee.
Please be creative and let your imagination be the guide! Be prepared to discuss your interview
in class (brief – 5 minute summary). Please turn in a one page summary of the answers to the
questions list above.
5. Curriculum Vitae
Due September 18th
Please develop your curriculum vitae in the format that you will use when you attend NSGC and
to continue to modify as you apply for jobs. Examples will be provided and format will be
discussed in class. You should buy appropriate heavy weight paper (typically white, off white,
or other neutral shade) for use when applying for jobs, but a plain paper copy is all that is
required for this assignment. Suggested changes to your CV will be made and returned to you.
6. Finucane book fact sheet
Due September 25th
Read Working with Women Who Have Mental Retardation: A Genetic Counselors Guide by
Brenda Finucane. We have ordered two copies of the book for the class to share and return, or
you may borrow a copy from one of the counselors. It is an easy, but informative, read.
Please make yourself a fact sheet with details on tips for counseling women with mental
retardation.
7. Annotated Bibliography for Teratogens
Due October 9th
For each of the readings for this lecture, please summarize the key points of each article. This
may take the format of a paragraph for each article or bullet points. Please limit your total
information to 2-3 pages. Assigned articles for this lecture are:
Brown N, Fabro S (1983). The Value of Animal Teratogenicity Testing for Predicting
Human Risk. Clin Obstet Gynecol 26(2): 467-77.
Feldman Y et al (1989). Determinants of Recall and Recall Bias in
Studying Drug and Chemical Exposure in Pregnancy. Teratology 40:3745.
Goldberg J, Golbus M (1986). The value of case reports in human teratology. AJOG
154:479-82.
Lo WY, Friedman, JM (2002). Teratogenicity of Recently Introduced Medications in
Human Pregnancy. Obstet Gynecol 100:465-73.
Scialli AF (1997). Identifying teratogens: The tyranny of lists. Reproductive Toxicol
11:555-9.
8. Teaching Assignment
Due October 16th
Our Division gets several requests from area high school and college teachers/professors for
lectures regarding various topics related to genetics and genetic counseling. The genetic
counselor must be ready and able to present level-appropriate material in a professional
manner. The Teaching Assignment was designed to help build both organizational as well as
communication skills. This assignment consists in working in groups of two or three students
and putting together a 40-50 minute slide presentation regarding the following topics:
(1) For a lay audience – Preconception/early pregnancy lecture on ethnic screening,
multiple marker screening, ultrasound, AMA, prenatal diagnosis and prenatal genetic
counseling
(2) For a high school group – Genetics and Genetic Counseling as a
Career
(3) For a lay audience/support group - Cancer Genetic Counseling
(include breast/ovary and colon)
You will sign up on the first day of class. The audiovisual presentation should preferably be a
PowerPoint presentation that can be saved to disk/CD for use in giving talks. Upon review and
revision of the presentations, I will have all three sets of talks for members of the class to use
in giving presentations. Later in the academic year, each student will be asked to deliver such a
presentation. The topic of the presentation may not necessarily be the one that the student
worked on for their in-class assignment. However, each student will be asked to conduct an
audiovisual presentation between now and graduation. Some students may be asked to do
more than one presentation, depending on the demand for such talks during the next few
months. The level of the presentation should obviously be geared towards the type of audience
you will be addressing.
9. Cross cultural Assignments
Due October 30th
Oral Presentation
All individuals belonging to a specific ethnocultural or religious background should not be
categorized. However, the genetic counselor should be aware of some of the potential
characteristics shared by particular populations. Toward that end, I ask that you compile some
information regarding one of the following groups of individuals. For example, does this
particular group work within a matriarchal or patriarchal hierarchy? What are their views on
prenatal testing and/or pregnancy termination? How do they relate to Western Medicine and
how does it affect their traditional beliefs? What are the dominant religions and how do the
religious beliefs affect medical care? Obviously, there are many more interesting facets to the
subject left for you to explore. You will be expected to present your findings in class on
October 30 so that we can all learn from each other and disseminate a fact sheet to your
classmates.
1. African-American
2. Hispanic/Latino
3. Ashkenazi Jewish (also Orthodox sect)
4. Asian Indian (Hinduism)
5. Middle Eastern (Islam)
6. Asian (Japanese)
7. Asian (Chinese)
10. Open Topic
Due November 20th
This class is designed to allow each student the opportunity to research a topic that has come
up in their counseling that they wish they knew more about. Choose from the following topics,
or if you have another idea, please discuss with Andrea. After a complete literature search,
summarize your topic for the class. Provide handouts or other visual aides for your classmates
to utilize in their own counseling. Your presentation should last approximately 15 minutes.
Prior Topics/Suggested Topics include:
Selective Reduction
Patients with Rh/antibody isoimmunization (Kell, C, D) –
(detection, care in pregnancy, role for genetics/GCs)
Pharmacogenetics/genetic resistance
Maternal infections – TORCH
Sterilization for women with mental retardation – legalities?
Bone marrow transplantation/stem cell therapy for genetic diseases
Fetal organ donation/autopsies
What really happens at …PT/OT/Speech therapy/early intervention
(what terminology/insights does a GC need?)
What is an IEP? What options do parents have for children with
Disabilities?
Explain these diagnostic tests? (hearing, vision, brain imaging, etc)
11. Support Group Assignment
Due December 4th
Each student is asked to attend at least two sessions of a support group sometime between
now and the end of the fall semester. Some groups will have more meetings than others, and
the student will be encouraged to attend more than two meetings. You may want to refer to
the Thursday edition of the State newspaper or the Sunday health section for some ideas
regarding local support groups. Of course, I will always be available to help out as well. Please
call the contact number/individual to verify the meeting location, time, and topic and to ask
permission to attend the meeting.
At the meeting, the student should observe the group dynamics. The student should speak
with the group contact person and ask for their comments on the organization of a support
group (i.e. how they made it work, what didn’t work, how formal/informal their organization is,
etc.). The student is required to present an oral summary of the group meeting. This should
include a description of the environment, organization and agenda of the meeting, as well as
the organizer’s comments on this group. It should also include a detailed description of the
interaction of the group members, emotions observed, etc. The student should specifically give
examples of coping mechanisms, responses to grief, etc. that the student recognizes from
reading/experience.
In class, we will discuss support groups from both an organizational standpoint and as a
resource to our patients. Students will be expected to draw their support group experience for
this class discussion. I prefer that no more than one student attend a specific support group
meeting or report on that group’s activities.
12. Video Self-Critique
Due by December 11th
Toward the end of the semester (after November 15th), you will set up a time to video tape a
genetic counseling session in which you are the genetic counselor for a simulated patient. You
will be given a reason for referral prior to the session as well as limited patient information. The
patient will be given more extensive information regarding the indication, family history,
psychosocial issues etc…that may surface during the session. Your session will be video-taped.
After the session, the patient will provide feedback to you regarding such things as rapport,
attending skills, and your utilization of advanced counseling skills (advanced empathy,
confrontation, advice giving etc…) This assignment is designed to give you an opportunity to
integrate and apply the genetic counseling skills you have learned thus far in your training. In
addition to explaining complex genetic information, you will be asked to focus on the emotional
content of language in all phases of the genetic counseling session and elicit your patient’s
psychological needs.
After your session you will self-critique your performance by watching your video and writing a
6-8 page paper. The paper should use narrative to describe the interview, comment on
language, nonverbal behaviors and the inferences you derived from the behaviors ,and explain
areas in the session where you felt comfortable with your skills as well as areas you felt
uncomfortable. Use the case to illustrate areas where your skills can/should be improved
during your last semester of training. Suggest in detail how you would change your work in the
session if you could repeat it.
Cite at least 3 sources in the literature, experiences in the field, and/or experiences in the
classroom (not just Weil and Baker) that support your performance and self-assessment.