1. ROLE PLAY
Read your role and situation. Discuss and answer the questions. Please consider your likely concerns (in your role) about ...
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your own health and that of your children
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racial discrimination
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finances and possible litigation
... write down a few notes and be ready to share with the class.
Then, on your own, consider: what might you (your real you, a biochemistry student) want to tell your role-play character?
1. You are an insurance officer for an HMO.
You arrive at the office on Monday morning, and a press release focusing on recent medical news has arrived at your desk. The American College of Obstetricians and Gynecologists and the American College of Medical Genetics have recommended that cystic fibrosis (CF) screening information be provided to "couples who are in lower-risk racial and ethnic groups and have no known ancestors from high risk groups."
Who are these high and low-risk groups? What financial concerns do you have about your company either providing or not providing this screening to patients? How could screening results be useful to you?
2. You are a fourth-generation Danish- and Finnish-American woman. Your husband's second cousin died of cystic fibrosis (CF) at thirteen, and you are pregnant with your first child.
On a visit to your family physician, she suggests that you consider genetic testing to "make sure your baby is going to be healthy." In particular, she notes the case of CF in your husband's family history and mentions that a test for this crippling disease has recently been discovered, and that Caucasian people are in the highest risk group.
How can a genetic test "make sure" your baby will be healthy? What questions do you have for your doctor?
3. You are a fourth-generation German-American woman from a wealthy family. Your husband's second cousin died of cystic fibrosis (CF) at thirteen, and you are pregnant with your first child, which you think is your husband's but are not entirely sure.
On a visit to your family physician, she suggests that you consider genetic testing to "make sure your baby is going to be healthy." In particular, she notes the case of CF in your husband's family history and mentions that a test for this crippling disease has recently been discovered.
How can a genetic test "make sure" your baby will be healthy? What questions do you have for your doctor? What might be your reasons for wanting or not wanting a genetic test for your baby?
3. You are a Jamaican-American woman, and you live in Mt. Airy. Your younger sister died at a young age from a lung condition that you now believe may have been cystic fibrosis (CF).
When you are thinking about getting pregnant, you mention to your doctor that you are interested in the possibility of genetic testing for yourself or your future child to determine whether you carry a gene for CF. Your doctor says that there is not really a gene for CF, and that the disease "does not really affect Black people."
Why ask for a genetic test? How do you react to your doctor's comments? What evidence might you have that your sister had CF?
4. You live in LA.
Your HMO offers you and your wife a genetic test that will determine if either of you are carriers for cystic fibrosis (CF). Your wife is a libertarian and vehemently pro-life. In the letter from your HMO, it is explained that "once the couple finds out their test results, they are encouraged to discuss with their doctor what action might be appropriate."
What questions do you have for your HMO? What concerns might you or your wife have about this testing program?
5. You work for the Cystic Fibrosis Foundation, an organization that raises money for CF research and does outreach to patients and families.
How do you feel about the possibility of a national testing program? Many insurance companies will not pay for CF testing. How do you talk to families who cannot afford this testing about CF? Who do you want to tell about testing? The phrase "65 Roses" has become a trademark of the foundation:
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Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary posed the question, "What am I working for, Richard?" "You are working for 65 Roses," he answered so sweetly. Mary was speechless. (http://www.cff.org/about_cf/the_story_of_65_roses/)
What do you think about the high abortion rate for children of couples who both test positive for CF alleles?
6. You and your husband got genetic counseling before trying to have a baby. You both told you are heterozygous for a gene for cystic fibrosis (CF). You recently read an article in a health and fitness magazine about genetic testing. The article said that there is no one gene for CF or breast cancer, and that tests are grossly inacurate.
How do you react to the results of this test? What questions do you have for your doctor? Will you still try to get pregnant?
7. You are a physician.
You arrive at the office on Monday morning, and a press release focusing on recent medical news has arrived at your desk. The American College of Obstetricians and Gynecologists and the American College of Medical Genetics have recommended that cystic fibrosis (CF) screening information be provided to "couples who are in lower-risk racial and ethnic groups and have no known ancestors from high risk groups."
How do you use this information? How does this recommendation influence the rate at which you suggest testing for Caucasian patients?
2. WRITING ABOUT GENETIC TESTING AND PATENTING
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The "breast cancer gene," BRCAI has been patented. On May 5, 1998, patent number 5,747,282 was issued to "inventor" Mark H. Skolnick et al., and assigned to Myriad Genetics and the University of Utah Research Foundation. If anyone wants to use that stretch of DNA to research, test, or cure breast cancer—or for anything else—they're going to have to pay Myriad Genetics for the privilege. No wonder Myriad Genetics, and the companies like it, are generating Wall Street excitement.
Since presumably Skolnick didn't "write" that gene, didn't create it, how did he get to claim to be its inventor? Patenting genes is a relatively recent phenomenon. Scientists have liked to think of themselves as discoverers, finding the world as it is, not inventors, creating a world of their imaginations. But patenting requires scientists to define themselves as inventors, now that the courts have decreed that once a specific gene sequence is taken out of a person and identified, it can be patented.
Patenting was designed to give individuals ownership of the fruits of their labors: an inventor or holder (the assignee) of a patent has exclusive rights to that invention. During the period of a patent, usually seventeen to twenty years, the inventor can sell the patent, or license it for a fee or for a royalty. Patenting makes genetic research profitable. In the United States, Myriad Genetics charged two and a half times as much to screen for the two breast cancer genes, BRCA1 and 2, as it cost in the United Kingdom before the patenting of genes had been granted there.
At a recent panel at the World Peace Forum, scientists and lawyers representing the interests of industries argued with me about how important it is to permit patenting. Without patents there would be no potential profit, and then, they argued, no investment. Why, after all, would anyone want to cure cancer? It has to be for the profit motive, the only imaginable reason anyone does anything. No patents, no profit; no profit, no incentive; no incentive, no cure.
If it really is the case that we have organized our collective lives in such a way that if there is no profit to be made then there is no incentive to cure cancer, we are indeed morally bankrupt.
The Book of Life: A Personal and Ethical Guide to Race, Normality and the Human Gene Study by Barbara Katz Rothman Beacon Press, 2001
CF Testing Consensus Statement from the NIH
Genetic testing for CF should be offered to adults with a positive family history of CF, to partners of people with CF, to couples currently planning a pregnancy, and to couples seeking prenatal care. The panel does not recommend offering CF genetic testing to the general population or newborn infants. The panel advocates active research to develop improved treatments for people with CF and continued investigation into the understanding of the pathophysiology of the disease. Comprehensive educational programs targeted to health care professionals and the public should be developed using input from people living with CF and their families and from people from diverse racial and ethnic groups. Additionally, genetic counseling services must be accurate and provide balanced information to afford individuals the opportunity to make autonomous decisions. Every attempt should be made to protect individual rights, genetic and medical privacy rights, and to prevent discrimination and stigmatization. It is essential that the offering of CF carrier testing be phased in over a period of time to ensure that adequate education and appropriate genetic testing and counseling services are available to all persons being tested. (http://odp.od.nih.gov/consensus/cons/106/106_intro.htm)
