Introduction
Mary Jane Smith is a 42 year old woman who has been
diagnosed and treated for breast
cancer. Mary Jane has a married sister, Samantha who has three
children--two daughters, Fran and Irene, and a son, Don; all three
are in their teens. Mary Jane and Samantha's mother died of breast
cancer at the age of 48.
Mary Jane's doctor is a breast cancer researcher at a local
university hospital. She invited Mary Jane to have a genetic
test to determine if her breast cancer was the inheritable
type. Test results showed that Mary Jane has a gene called
BRCA-2 which accounts for about 2% of the breast
cancer cases diagnosed each year. The BRCA-2 test was not available
while Mary Jane and Samantha's mother was alive, so there is no way
to tell if Mary Jane inherited the gene from her mother or her
father. Mary Jane has the gene, so there is a 50% chance for each of
her children that they have inherited the gene from her. This gene
triggers breast cancer in both males and females, and 85% of females
having the BRCA-2 gene develop cancer. Athough only 1% of breast
cancer occurs in men, most of these cases occur in men with the
BRCA-2 gene.
Research on the BRCA-2 gene is very new, and the doctor asks Mary
if she can study the family to determine their risk
for this disease. She needs the cooperation of all family members in
order to include them in the study.
Mary Jane knows that early detection is extremely
important for survival. She has recommended that all family members
be tested.
Samantha is 40 years old and does not want to be tested.
However, her daughters are interested in participating in the
research and knowing their risk for breast cancer. Samantha's son
does not have an opinion. If any of the children has the gene,
Samantha will know that they have inherited it from her.
Classroom Scenario written by Sylvia Spengler
(SJSpengler@lbl.gov) and
Catherine
Pinkas(CIPinkas@lbl.gov) ,
Ethical, Legal,
and Social Issues in Science, Lawrence Berkeley National
Laboratory.
Your assignment for the next three weeks will be to investigate this
disease and prepare a "story book" about the disease. The genetics
counseling community ascribes to a belief in non-directive
counseling. That is, they feel that it is their duty to provide all
of the information that is available and desired by a family so that
they can make the decisions that are appropriate to them based on
their own cultural, moral, religious, etc. beliefs.
Your investigation should include medical information important
for people with this disease so that they can live a healthy and
prolonged life. This might include:
- a pedigree for the family described
- family members who appear to possibly have the disease
- a prediction of the chances of their offspring having this
disease
- the ethical and social issues involved in this particular case
for the child and the parents
Each image must have a caption. The presentation will be given
using ClarisWorks® or Microsoft PowerPoint®
presentation software. It should be written such that
someone else could view the presentation and understand the key
points without an accompanying verbal explanation.
You may not violate copyright laws. Any images or other resources
retrieved from the internet and used in your presentation must be
accompanied by a
reference
telling where it was obtained.

Technology Support
Netscape
Basics
- Here you can find a wealth of helpful information about your
Netscape software and how to overcome any problems you might
encounter with it.
Finding
Information
- Finding what you want on the Internet can be like looking for
a needle in a haystack. Online search tools help you track down
whatever it is you're looking for.
Helpful Exercises
The following exercises were designed to help you understand human
genetic diseases, including the medical facts, diagnosis, probable
course of the disorder, and the available management. While these
exercises are, of course, optional, you are strongly encouraged to
complete them:
Guidelines
for Reporting and Writing About People with Disabilities
- The University of Kansas and other national associations have
endorsed a a set of clear guidelines to help you make better
choices in terms of language and portrayal. The "Guidelines"
explain preferred terminology and offer suggestions for
appropriate ways to describe people with disabilities.
Understanding
Gene Testing
- This represents an effort by the National Cancer Institute and
the National Center for Human Genome Research to provide basic
information about gene testing and key genetic concepts. This
booklet also provides answers to a number of frequently asked
questions about the science, potential benefits, and potential
risks of gene testing.
Genetic
Counseling: Coping With the Human Impact of Genetic Disease
Genetic
Consultation/Counseling: The Process
- Describes what they do and how they do it.
Genetic
Testing-Health Care Issues:An Interview with Dr. Neil Holzman
- An excerpt from an interview with Dr. Neil Holzman that took
place at the "Winding Your Way through DNA" symposium at the
University of California San Francisco in 1992. Dr. Holzman is an
M.D. and a health policy expert.
Genetic
Conditions/ Rare Conditions: Support Groups & Information
- Medical Genetics, University of Kansas Medical Center
Professionals, educators, or individuals seeking information on
genetic conditions or birth defects may find this list helpful;
find additional information through the national and the
international organizations listed below; or contact a genetic
counselor or clinical geneticist.
OMIM
Home Page--Online Mendelian Inheritance in Man
- This database is a catalog of human genes and genetic
disorders authored and edited by Dr. Victor A. McKusick and his
colleagues at Johns Hopkins and elsewhere, and developed for the
World Wide Web by NCBI, the National Center for Biotechnology
Information. The database contains textual information, pictures,
and reference information.
Mendelian
Genetics, an interactive computer program which covers the
main concepts of genetics
Genetic Counseling, March of Dimes Birth
Defects Foundation
Newborn
Screening
- The Virtual
Hospital uses the World-Wide Web (WWW) software
technology to store, organize, and distribute multimedia textbooks
including the Clinician's Handbook of Preventive Services.
DOE
Primer on Molecular Genetics
- This primer was prepared by Denise Casey (Human Genome
Management Information System - Oak Ridge National Laboratory) for
the1991-92 DOE Human Genome Program Report.
Home
Page for Genetic Professionals
- Information for genetic professionals at the University of
Kansas Medical Center is updated regularly for genetic counselors,
clinical geneticists, and medical geneticists with links to a
variety of clinical, research and educational resources.
Genetics &
Public Issues
- The National Center for Genome Resources (NCGR) in Santa Fe,
New Mexico is assembling educational and informational resources
for the public, physicians and other professionals. This
information is selected to help the public direct and make
informed decisions about genetic information, technology and
services. It is also selected to help industry and policymakers
guide the application of genetic research and biotechnology. .
Geneticists
& Ethicists Mentor Network,
- Teachers and students can send questions to professionals in
genetics, law, public policy, and ethics.
-
-

Template developed by
Dr.
Mark Horrell at the Illinois
Mathematics and Science Academy
Created: April 18, 1996