Authors
Giovanni Frazzetto, Halldor Stefansson, Sabine Hentze, Julia Willingale-Theune, Alexandra Manaia
Description
The sequencing of the human genome, completed in
2000, has helped identify many genes which, when
abnormal, are responsible for diseases. Genetic
tests for some diseases already exist and others
are being developed. However, administering such
tests reveals personal genetic information, and
this can create a dilemma. Deciding how the information
should be used and who should have access to it
raise complex ethical issues. Obviously some uses
and wide access could serve the common good helping
to predict the onset of genetic diseases, creating
possibilities for intervention, etc. but there is
a tension between this and what we consider personal
rights (such as protecting our privacy and respecting
individual diversity). Alzheimer's disease provides
a good example of one dilemma that can arise. In
a certain percentage of patients, the condition
is of genetic origin, i.e. inherited. If a parent
were diagnosed with Alzheimer's disease and a genetic
test were available, would you want to be tested?
The test could come back positive many years before
you showed symptoms. Unless kept completely private,
that information could become available to other
family members, employers and insurance companies
with obvious potential negative consequences. These
and other questions are raised in the fact sheets.
In the role play, two different case studies have
been chosen to illustrate some of the potential
societal and ethical conflicts raised by genetic
testing. The players represent a specific interest
group involved in one of these cases and serve as
experts on a 'virtual ethical committee,' whose
job is to advise a court charged with resolving
the cases.
Target audience
Age 14-18 years
Objective
To help school children understand the social consequences
of genetic testing and to get them to think how far
we should go in using the information from such tests.
GCSE Syllabus
Double science Key stage 4 Sc2
Life Processes and Living Things
Cell activity
1. Pupils should be taught:
c. The nucleus contains chromosomes that carry the genes
d. How cells divide by mitosis during growth, and by
meiosis to produce gametes
Variation, inheritance and evolution
4. Pupils should be taught:
Variation
a. How variation arises from genetic causes, environmental
causes and a combination of both
b. That sexual reproduction is a source of genetic variation
c. That mutation is a source of genetic variation and
has a number of causes
Inheritance
d. How sex is determined in humans
e. The mechanism of monohybrid inheritance where there
are dominant and recessive alleles
f. About mechanisms by which some diseases are inherited
g. That the gene is a section of DNA
h. The basic principles of cloning, selective breeding
and genetic engineering
Advanced Subsidiary GCE and Advance GCE specifications
for Human Biology
This activity covers the following
issues explicitly covered in human biology under Health
and Safety Education:
Genetic disorders
Genetic screening and counselling
Ethics
Growth, development and disease
Detecting and treating cancer
Investigating foetal development
Genetic disease
Materials
Uses
and the risk of abuse [PDF]
Genetic
counselling [PDF]
Cystic
fibrosis [PDF]
Fact
sheet on violent behaviour [PDF]
Genetics
[PDF]
Mini-glossary
[PDF]
Background
reading [PDF]
Useful
websites [PDF]
Virtual Expert Committee
Giovanni
Frazzetto [PDF]
Role Cards
Case Study 1 Cystic fibrosis and pre-natal diagnosis:
Hughes vs. Medicis Insurance Company
Case Study 2
Genetic testing for aggressive behaviour: Matt Scott
vs. NY police Academy
Science
News
of the week: violent effects of abuse tied to gene [PDF]
Copyright © 2005 European Molecular Biology
Laboratory |
