Richard R. MacMahon, Ph.D.
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Mother’s Age
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Incidence of Down’s Syndrome
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16-26
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1:1300
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27-34
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1:700
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35-39
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1:350
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40-44
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1:100
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45-47
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1:30
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48 + above
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1:12
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In this case the couple had waited until the woman was 35 to start their family. They were told that there was an increased chance that there might be birth defects in their child, but were given no specific information on Down’s syndrome. There was some informal discussion of birth defects and amniocentesis, but no formal counseling. They belonged to an HMO in California which does not allow for this type of counseling.
Situation #2: Huntington disease is a genetic disorder which is caused by a lethal dominant allele located on the short arm of chromosome 4 (Wexler, 1995). At about 35 to 40 years of age, the afflicted individual begins to suffer a deterioration of the nervous system. The results are always irreversible and fatal. Mental capacity usually diminishes and is gone in five to ten years, but the individual may survive in a vegetative state for many more years. Most people so afflicted are able to start a family well before the onset of the affliction.
In the present case, the young woman had worked for a company for twelve years. Her father had died of Huntington disease several years ago. She finally decided that she wanted to know if she would also have her life shortened by this disorder. At thirty, she thought she might like to do some things and make some plans. Her blood test was positive. Her employer requested her medical file from her physician, producing a medical release that she had signed when she began work at the company. She had no knowledge of this form. Shortly thereafter she was terminated for “unacceptable work performance”. This after twelve years with the same company, and many positive evaluations in her file.
Situation #3: The BRCA1 gene codes for a protein. This protein is packaged and excreted from the cell. It is partly broken down by an enzyme into large polypeptides, which act as messenger molecules. These molecules are accepted at receptor sites on cells of mammary and ovarian tissue. BRCA1 seems to act as a regulator of cell division and prevents too-rapid cell division of these tissues. When the BRCA1 gene is mutated it can no longer produce this messenger molecule. Cell division is then not properly regulated and rapid cell division and a tumor are the result. (Angier, 1996)
The BRCA1 gene was discovered in 1994 and a test for its detection has recently been patented by the Myriad Genetics Corporation. They plan to offer this test commercially by the end of 1996. It is presently available only in research settings in medical schools and hospitals. (Beardsley, 1996)
Those families with hereditary breast cancer account for less than ten percent of all cases. But mutation of the BRCA1 gene confers an 85% lifetime risk of breast cancer. Further complicating the picture is the recent identification of a second breast cancer gene BRCA2.
In the present case, the young woman requested genetic screening for the BRCA1 gene, since both her mother and aunt were afflicted with breast cancer. The results were positive for a mutated BRCA1 gene. When she asked her insurance company about paying for a prophylactic mastectomy under her employer’s group health plan, she was told that they would not cover the procedure since she did not have breast cancer. Shortly thereafter she was fired by her employer and her medical insurance was terminated. She had worked for this company as an accountant for seven years and her work record was excellent.
Situation #4: Enforced sterilization is not a new phenomenon. It has occurred in many countries at various times in attempts to “weed out” people with mental deficiencies. The policies and practices of Nazi Germany are a good example. Even in the United States enforced sterilization has been practiced (Reilly, 1991; Kevles, 1985). In the 1930’s eugenics was in fashion. Illiterate black women were declared mentally retarded because they could not read and were subsequently sterilized. The assumption was that this “mental retardation” was genetic and inherited. “By 1931, 27 states had passed laws allowing compulsory sterilization of ‘the feeble-minded,’ the insane and the habitually criminal.” (Gibbs, 1995)
At the present time there are suggestions that the U.S. deny immigration to individuals who do not “pass” an IQ test. The Senate of the U.S. has recently heard this and other arguments in support of a more restrictive immigration policy. (Reilly, 1991; Herrnstein and Murray, 1994; Jensen, 1969; Gould, 1981, 1994)
This situation is based upon the premise that Scientific Racism is on the rise again. There are four recent books that point to this phenomenon—Herrnstein and Murray (1994), Rushton (1995), Brimelow (1995) and D’souza (1995). This situation is an extrapolation based upon what I have seen and read in recent years and is a “worst-case scenario”. Yet I do not feel that it is beyond the realm of possibility. For a superb treatment of the history and present state of eugenics read the book by Kevles (1985).
PROCEDURES
For each of these situations, the students are assigned roles and directed to the relevant literature in order to understand and defend their particular position. Each student’s role is critical. Without adequate research and development by the students, the situations will not develop in a meaningful way when acted out. Key roles must go to students capable of reading and understanding the background and preparing their positions. Yet at the same time, no one may be excluded or minimized in their role. Obviously all roles are not of equal importance but students must feel what they are doing is of importance or they will not perform in a meaningful fashion.
More literature is available in the teacher’s bibliography. Teachers must master not only the genetics of each case, but the ethical issues involved. And ethical issues never seem to have neat answers. There will be outlines and schemes presented which will help the teacher in preparing the students for their presentations.
Some of the scenarios are set in the near future. There will also be some materials presented from which the teacher and class may be able to imagine what our world will be like in fifteen to fifty years.
EDUCATIONAL OUTCOMES
Student will learn:
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1. To do a literature search and extract information from published materials.
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2. To present forceful and factual arguments defending their positions, based upon their literature research.
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3. To understand something of this country’s legal and legislative systems by assuming both legislative and judicial roles in the classroom presentations of these ethical arguments.
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4. To realize that there are various points of view; that ethical standards among different races, religions and political groups do not always coincide; that ethics boils down to a respect for privacy and the beliefs of others; and to realize that dogmatism will not bring solutions.
SCENARIOS
SITUATION ONE: A suit brought by a couple against a physician because they were not given proper genetic counseling and subsequently had a child with Down’s syndrome.
ROLES
MOTHER OF DOWN’S SYNDROME CHILD
HUSBAND OF MOTHER/ FATHER OF CHILD
RESPONSIBLE PHYSICIAN
HMO REPRESENTATIVE
LAWYER FOR PLAINTIFFS
LAWYER FOR DEFENDANT
WITNESSES CALLED BY EACH SIDE (Number Varies)
JUDGE
JURY OF TWELVE CITIZENS
COURT PERSONNEL AS NEEDED TO CREATE A ROLE FOR EACH STUDENT
SOURCES
Campbell, 1993
Hoffman, D’Amado and Seeger, 1988
Suzuki and Knudtson, 1990
Kevles and Hood, 1992
Stirling, 1996Wertz and Fletcher, 1989
SITUATION TWO: A thirty year old person fired from her job because her genetic profile, which showed that she was carrying the gene for Huntington disease, became available to her employer under questionable circumstances
ROLES
WOMAN FIRED FROM HER JOB
PRESIDENT OF COMPANY INVOLVED
LAWYER FOR PLAINTIFFS
LAWYER FOR DEFENDANT
WITNESSES CALLED BY EACH SIDE (Number Varies)
JUDGE
JURY OF TWELVE CITIZENS
COURT PERSONNEL AS NEEDED TO CREATE A ROLE FOR EACH STUDENT
SOURCES
Campbell, 1990Anon., 1996
Suzuki and Knudtson, 1990Bok, 1978
Kevles and Hood, 1992Gorman, 1996
Kevles, 1986Kolata, 1995
Wertz and Fletcher, 1988Wexler, 1995
Beardsley, 1996
Hoffman, D’Amado and Seeger, 1988
SITUATION THREE: A young woman is found to be carrying the
BRCA1 gene. Her request for payment for a prophylactic mastectomy is rejected by her insurance company. Shortly after she is fired and her medical insurance is terminated.
ROLES
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YOUNG WOMAN WHO IS FIRED
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PRESIDENT OF COMPANY INVOLVED
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LAWYER FOR PLAINTIFFS
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LAWYERS FOR DEFENDANT (SEVERAL)
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WITNESSES CALLED BY EACH SIDE (Number Varies)
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JUDGE
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JURY OF TWELVE CITIZENS
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COURT PERSONNEL AS NEEDED TO CREATE A ROLE FOR EACH STUDENT
SOURCES
Campbell, 1993Angier, 1996
Suzuki and Knudtson, 1990Bok, 1978
Beardsley, 1996Gorman, 1996
Kevles and Hood, 1992Smith, 1996
Wertz & Fletcher, 1989
Hoffman, D’Amado and Seeger, 1988
SITUATION FOUR: A proposed law in 2010 requires sterilization of anyone whose IQ score is less than 70.
ROLES
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MODERATOR OF THE LEGISLATIVE BODY
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PROPONENTS FOR THE BILL IN QUESTION
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OPPONENTS OF THE PROPOSED LEGISLATION
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EXPERT WITNESSES CALLED BY EACH SIDE (Number Varies)
SOURCES
Campbell, 1993Gorman, 1996
Suzuki and Knudtson, 1990 Horgan, 1993
Herrnstein and Murray, 1994Kevles, 1985
Kevles and Hood, 1992Gould, 1981
Jensen, 1969Gould, 1994
Reilly, 1991
Hoffman, D’Amado and Seeger, 1988
STUDENT ROLES: EXPLANATION AND HELPFUL IDEAS
You, the students, will determine the success or failure of this assignment. If you are assigned an active role, such as a lawyer or witness, you must each read several books and articles and pull all of this information together.
JURY MEMBERS, you must listen to the information presented and then come to a decision based upon that information. You may not use outside information or opinions of your own. You must try to render a fair and impartial verdict based solely upon the evidence presented.
LAWYERS, you may know that you are right. Justice is on your side! But remember, Justice is blind. No matter how sure you are of your position, you must convince a jury of your surety, and convince them that you represent the valid and successful side of the dispute. You must be able to present credible expert witnesses, and be able to question the credibility of your opponent’s expert witnesses.
The only way for you to win is to thoroughly understand the case you are arguing. You must read and understand all of the background material. If you do not understand the case, you cannot win for your client. And you can be sure that your opponent lawyer will have done the necessary homework!
WITNESSES. Lawyers may assign fellow students as expert witnesses. These expert witnesses must also thoroughly research and understand the background material, relevant to their position or occupation. All witnesses must be advised to only contribute what you as a witness would have knowledge of. Do not try to be helpful by volunteering information that you have discovered, but that you in the role of a witness would not have. Witnesses should include laboratory representatives, DNA specialists, medical geneticists and any other roles that the lawyers think would be helpful to their case.
JUDGES must be responsible for a fair trial. You are not expected to have read a tremendous amount of background material. It must be sufficient for you to understand what is being talked about in court. You are expected to make sure that the trial is carried out in a civil manner, and that what is said is fair and accurate in terms of law. You will need to do some research on court procedures and the legal background of similar cases. You may also have to rule on testimony of witnesses and whether or not they would have knowledge about the subject upon which they are testifying. (Blakeslee, 1996)
TEACHERS: SOME ADDED NOTES
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1. It is intended that only one scenario be attempted by each group of students. If the class is small, this might mean that only one scenario would be attempted. These scenarios will all require at least twenty people.You might try using only six students for the jury.
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2. This paper is being written during the summer of 1996. By the time you read it and decide to use it, there will probably be a large number of additional source articles to present to the students.
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3. Some of the scenarios may be moot points by the time you are ready to use them. For example, situation three involves a young woman and her insurance company. Governor Whitman of New Jersey in July of 1996 signed into law a bill making it illegal for insurance companies to have access to genetic testing results.
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4. There should be some sort of introductory class discussion and analysis of the ethics and morality involving genetic information and its accuracy, accessibility, confidentiality and dissemination. There also needs to be a discussion about possible differences in the ethical positions taken by geneticists and physicians, not to mention insurance companies, pharmaceutical companies, HMO’s, and businesses. The entire concept of honesty and trust in government and companies might be examined (Bok, 1978).
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5. I have included in table III a scheme for assessment of student performance. This is based in part upon the CAPT science experiment assessment, and partly upon a scheme from Stephen Beasley-Murray, whose paper appears in this same series.
