RESEARCH PROJECT

for

GENETICALLY TRANSMITTED DISORDERS

Introduction

(From "Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy" BSCS, American Medical Association, 1992.)

"Suppose that it becomes possible for geneticists to identify the genes that predispose certain people to heart disease, or those genes that will cause individuals to become blind as they age. If you knew what genes you have and what genetic disorders they might cause, would it affect your choice of careers? Would it affect your decision to marry or begin a family? Suppose your potential employer also had access to your genetic information. Could the fact that an employer had this knowledge about your genetic information result in job discrimination? If you knew that some genes in your unborn baby might cause him or her to suffer from impaired mental or physical performance, would this affect your decision to carry the fetus to term?"

All of these questions are important issues and decisions that will confront our society as biotechnology and genetic engineering continue to advance.

Objectives

In this assignment you will:

* explore the origins and characteristics of a genetic disorder;

* research the effect the disorder has on the individual and family;

* determine the future effects of this disorder that our society will need to face;

* discuss the relationship of genetic engineering, the disorder, and the public policy questions which might arise.

Materials

Library resources, CD Rom, books, magazines, encyclopedias, SIRS files,

vertical file, pamphlets, any other sources of information you can find on your topic.

Procedure

After you have researched your genetic disorder, you are ready to write your report. You should organize it into three parts, as follows:

* Introduction of the genetic disorder. What is it? What is it like to have this disorder? How many people have it?

* Specific information on the disorder. Here is where you will elaborate on the facts

and statistics about the condition.

A. Origins or discovery of this condition. When did it first appear? Who

identified it as an inherited condition? How many people are affected?

B. Genetic transmission. How is the predisposition for this condition

passed on to the next generation? Do all offspring inherit it? Is it

linked to gender? Are only members of certain races or ethnic groups

susceptible to it?

C. How long does the condition take to show up? Is it fatal? If it is not fatal, what other negative effects can it have on the affected individual?

D. Can the inherited condition be avoided? If so, how? Describe the role

of genetic counseling. What about gene therapy?

* Conclusion. How much do scientists know about this condition? Is enough research being done on this condition? What hope is there for people with

this condition? What should be done about it?

* References. Use at least three sources of reference. Use an appropriate footnote and bibliography format, as your teacher specifies.