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Chapter 2

Controversial Issues in Gene Research

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Appendices

Appendix A (Printer-Friendly Format)

Glossary

Afflict: Cause pain or suffering.

Ancestry: The descendants or blood relative of one individual.

Blood clotting: A process in which liquid blood changes into a semisolid (a blood clot).

Carrier: An individual who does not show symptoms of a disease but has the genes for it and can transfer it to his/her child.

Cell (human): In biology, a structure surrounded by a membrane and containing genetic material (DNA) on the inside. Considered by most biologists to be the basic unit of life.

Chromosome: In organisms without a nucleus (such as bacteria), this is a circular DNA molecule used in genetic engineering. In organisms with a nucleus (including plants and humans), this is one of the threadlike structures within the nucleus that contains DNA.

Conduct: To act, guide, or manage (usually conduct research or experiments).

Convict: To find or prove (someone) guilty of an offense or crime, especially through the verdict of a court.

Destiny: Fate. A future that an individual cannot control.

Detect: To notice; to find; often used to describe the discovery of a disease.

Devastating: Terrible; causing great harm.

DNA: (deoxyribonucleic acid) A molecule in the form of a double helix , found within a structure known as a chromosome, within the nucleus of every living cell. First discovered in the 19th century, it controls the daily operation of a cell, and provides the genetic "blueprint" for the physical characteristics of all living organisms.

DNA testing: The analysis of human DNA, RNA, chromosomes, and proteins in order to detect the presence or potential presence of an inheritable disease.

Ethics: A set of principles of proper conduct. A system of moral values.

Extinct: No longer existing or living.

Gene: A small stretch of DNA that directs the production of proteins. A hereditary unit that occupies a specific position (locus) on the chromosome. This unit has a specific effect on the physical characteristics of the organism and can house one of many different allele forms (each allele causes a different trait).

Genealogy: A record or chart of a person’s extended family going back many generations; a family tree.

Genetic make-up: All the chromosomes and the information they contain. The genes of an individual.

Genetic testing: The checking of an individual's genetic material to predict present or future disability or disease, either in the individual or his/her children.

Gene therapy (human): Insertion of normal DNA directly into cells to correct a genetic defect.

Gene transfer: The movement of genetic material (DNA) from the laboratory into a human subject.

Human genome: The full collection of genes in a human being.

Immune system: A system which protects the body from disease causing agents.

Inherited disease: A disease or disorder that is inherited genetically.

Liver: An organ in the body which helps with metabolism, digestion, detoxification, and elimination of substances from the body.

Malignant cells: Cells that grow uncontrollably.

Obesity: The condition of having excessive body fat.

Paralysis: The loss of motor functions; the inability to move one´s muscles.

Pharmaceutical companies: Companies that make drugs or medicines.

Potential: 1. Possible. 2. Able to grow and develop.

Side effect: An unexpected, usually undesirable reaction to a medicine or therapy.

Tissue sample (human): A small portion of a group of similar cells taken for research of medical purposes.

Trial: The formal presentation of evidence and arguments when a person is accused of a crime.

Undergo: To experience; to endure; to suffer.

Appendix B (Printer-Friendly Format)

Handout 1 for Warm Up Activity

1) I would have a genetic test to determine if I had the gene for an incurable disease.	YES	NO	MAYBE
2) I would allow a potential employer to administer a genetic test before hiring me.	YES	NO	MAYBE
3) I would ask my relatives to save samples of my DNA after my death.	YES	NO	MAYBE
4) If I were accused of a crime, I would undergo a DNA test to prove my innocence.	YES	NO	MAYBE
5) I would pay a company to protect the privacy of my genetic information.	YES	NO	MAYBE
6) I would undergo gene therapy to cure a devastating or life threatening disease.	YES	NO	MAYBE
7) I would save the DNA of my dead loved ones.	YES	NO	MAYBE
8) I would use gene therapy to insure the sex� or improve the genetic make-up of my unborn baby.	YES	NO	MAYBE

Appendix C (Printer-Friendly Format)

Handout 2 for Activity 1

1) Four black men were convicted of the 1978 murders of a white couple in Chicago, Illinois in the U.S. Two of the men were on death row waiting to be executed when DNA evidence showed that they could not have been the ones who raped the woman victim.� As a result, they were released from prison. Later, three other men confessed to the crime and were convicted.

2) After the execution of the last Russian Czar Nicholas and his family during the Russian Revolution, the bodies of the two youngest children, Alexis and Anastasia, were never found. Until her death in 1984, Anna Anderson claimed to be the long-lost Crown Princess Anastasia. In tests, her DNA was compared to that of Prince Philip of Great Britain, a descendant of the Russian royal family. There was no match. Her identity as Franzisca Schonzkowska was established when her DNA was compared with that of a Polish nephew.

3) Nancy Seeger, a 56-year-old woman from Illinois in the U.S., worried her whole life about developing breast cancer since both her mother and her aunt had died from this disease. She was tested and found to have an 85% risk of breast cancer and a 50 percent risk of ovarian cancer. As a result of this information, she decided to have surgery.

4) A woman from California in the U.S., Ginger Empey, had advancing breast cancer. Since it had already spread to major organs when diagnosed, gene therapy was the only choice. She was injected with a genetically-engineered drug. Over the next year, her tumors shrank by 25 percent. After 3 years, they almost disappeared.

5) Ms. X, had given her daughter up for adoption many years before and had agreed to conceal her identity. However, she was not happy with her decision. Later in life, she searched and found a young woman whom she believed to be her daughter. The young woman was not sure that Ms. X was her mother, especially because the woman who claimed to be her biological mother was Jewish and she was raised as a Christian. DNA testing was used to prove the parental link.

6) O. J. Simpson, a well-known U.S. sports figure, was arrested on June 17, 1994 as a suspect in the double murder of his ex-wife Nicole and her friend Ronald Goldman. In the trial, DNA testing showed that blood found at the crime scene belonged to Simpson. This evidence was later successfully challenged by Simpson�s lawyers. He was found not guilty.

7) Scientists recently discovered the completely frozen carcass of a wooly mammoth, an ice age animal that has been extinct for thousands of years. They are hoping to extract DNA from the frozen animal and use it to recreate this species.

Appendix D (Printer-Friendly Format)

Case Study for Activity 2

Michelle Nicole Allen was born in 1978. A few months after her birth, it was determined that she suffered from sickle cell anemia, a blood disease common in people of African American descent. In 1983, Michelle�s mother became pregnant again and gave birth to a son, Michael, who developed the disease seven months later. Both children spent much of their childhood in hospitals. Michelle has now reached adulthood despite this grave illness. Michael is in his teens and, despite being hospitalized more often than his older sister, leads an active life that includes playing four musical instruments. Their mother is glad there was no genetic test available for sickle cell anemia when she was pregnant.
Michelle, at age 21, became pregnant and gave birth to a son, Philip. Before his birth, she was given the option of having genetic tests to determine if her son was a carrier for sickle cell. She opted against this test. Since Philip was born, he has been tested four times. Three times he tested positive and once negative. The family must now wait to see if Philip will develop the disease. It is their hope that the third generation of their family will not suffer from this illness.

Sample Dilemmas for Activity 2

Michelle�s mother�s dilemmas:

Whether or not to have a second child who might also have sickle cell anemia

Whether she should protect her children�s health or allow them to lead an active, normal life

Michelle�s dilemmas:

Whether or not to get pregnant at all

Whether to have a genetic test to determine if her unborn child is a carrier of sickle cell anemia

What to do if Philip develops the disease

Michael�s dilemmas:

Whether or not to get married

Whether or not to have children

If his wife becomes pregnant, whether or not to allow genetic testing for the unborn child

Sample Phrases for Activity 2: Expressing an Opinion

Expressing an Opinion

Disagreeing

Agreeing

In my opinion�

I can see your point but�

That�s a good point because�

I�d like to say that�

I�m not sure I agree. I think�

That�s my feeling, too.

I think that�

But don�t you think that�

I couldn�t agree more.

As I see it�

Are you saying that�?

I tend to agree with that.

Appendix E (Printer-Friendly Format)

Handout 3 for Activity 3

Disease	Relationship of genes to disease	Risk of getting disease	Other factors contributing to disease risk
Breast cancer	Scientists have found one specific gene in many breast cancer sufferers.	50–85%	Lifestyle (diet, exercise, level of stress) Environment in which you live Incidence of the disease in immediate family Other genes associated with this disease
Ovarian cancer	Scientists have found one specific gene in many ovarian cancer sufferers.	20–40%	Lifestyle (diet, exercise, level of stress) Environment in which you live Incidence of the disease in immediate family Other genes associated with this disease
Huntington�s	Scientists have found the same gene in all sufferers. They call it the �Huntington�s gene.�	nearly 100%	No other known factors
Colon cancer	Scientists have found one gene that has a connection to colon cancer.	100%	No other known factors except in a very small number of colon cancer cases
Alzheimer�s	Scientists have found one gene that has a connection to Alzheimer�s disease.	unknown	Other possibly-related genes are also being researched

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