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| Science and Society
Genetic Testing |
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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] |
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