To examine the ethical issues raised by three situations in which prenatal testing may be used to prevent or facilitate pregnancy.
The use of health technologies is an accepted phenomenon in our society. However, these technologies are associated with various controversies and questions that cannot be answered so easily.
This lesson introduces students to the ethical implications of using our growing knowledge about the human genome to improve our personal and public health. For example, students will be asked to evaluate a situation in which genetic tests have revealed that a pregnancy may lead to the birth of a child with some genetic disorder(s), such as cystic fibrosis
From an ethical standpoint, what does this type of information empower the parents of the child to do? What rights do parents have and what rights does the unborn child have?
Students will examine viewpoints from several perspectives, including the mother, the genetic counselor, the doctor, a person living with a genetic disorder, and a religious figure. Students will divide themselves into groups per perspective. Within these groups, students will research their person's perspective by going online, reading, and interviewing. Each group will present their researched point of view to the class.
Students will be asked to consider numerous ethical issues related to genetic testing and will find that there are no easy answers. Most importantly, students will learn that there is no one "answer" to an ethical question; rather, there exists a multitude of perspectives that must be taken into account. Ultimately, students will learn that making an ethical choice requires scientific knowledge and rational inquiry.
Before beginning this lesson, students should have a firm understanding of genetics, inheritance patterns, genetic diseases, and genetic tests. Students can find out more on gene testing at the following website, which is arranged in chapters. The relevant chapters are noted.
Understanding Gene Testing
- What is gene testing?
- What are the uses of gene testing?
- How are disease genes identified?
- What types of diseases can be predicted with gene tests?
Research has shown that students in upper-middle and high school have some understanding that characteristics are determined by a particular genetic entity, which carries information translatable by the cell. However, students of all ages believe that some environmentally produced characteristics can be inherited, especially over several generations. (Benchmarks for Science Literacy, p. 341.)
To begin the lesson, have students go to The DNA Files, a series of public radio documentaries about genetic research and its applications. Here, students will listen to a 13-minute excerpt entitled, Prenatal Genetic Testing: Do You Really Want to Know Your Baby's Future?
As students listen to the audio file, they should work on the SNL student sheet—Prenatal Genetic Testing.
At the site, click on the "excerpt" link. The excerpt begins with the story of an 11-year-old boy named Brendan Harrigan. He was born with cystic fibrosis, a hereditary disease that is now diagnosable during pregnancy. When Brendan was born, there was no such test. His family had no idea anything was wrong until Brendan began to have serious health problems when he was about 8 months old. Currently, there are genetic tests available for cystic fibrosis, as well as many other genetic diseases.
The audio excerpt discusses the ethical and psychological issues involved with prenatal testing, including the controversy of either carrying a baby to term with a genetic disease or having an abortion to end the pregnancy.
After listening to the audio segment, go over each of the questions and discuss each one. In particular, go over the limitations of the CF test. Explain to students that there are over 600 mutations that have been identified with CF. While genetic testing targets some of these mutations, not all of them can be identified with prenatal testing. Thus, the test may not accurately inform expecting parents about the severity of the disease that the child will exhibit.
Also point out that many people with CF live fruitful, happy lives if quality care is provided. Moreover, the probability of identifying CF in some ethnic groups such as Hispanics and Asians is very low. So, while an expecting parent might get tested, the results may be misleading.
You should also highlight the fact that there are a multitude of perspectives that women have not only on prenatal testing, but also on what to do with the information from the test. While some women choose to have an abortion after much thought, others believe in the sanctity of the life of the child, regardless of his/her mental and physical condition.
Clearly, the questions that arise from the test itself and the information it reveals are ethical ones. Ultimately, the choice to have the test done and what to do with the information is personal one, based on the culture and beliefs of the woman.
Have students go to the Interact section of The DNA Files website.
Tell students that they will put themselves in a scenario where they or someone they are close to could have a genetic disease. The scenarios include Marfan's Syndrome, Breast Cancer, and Transgenics.
Of the three scenarios, have students choose one that interests them the most. Students will read the scenario and be asked to make choices that will not only affect them, but people around them. As students read their chosen scenario, they should answer the questions on the SNL student sheet—What Choices Would You Make?
Tell students that they will examine the dilemma of one couple facing the prospect of having genetic testing done for CF so that they can have a healthy child. They will then divide into groups, representing different people and professionals involved in the decision-making of the couple. Each group will research the perspective of its role and present its point of view to the rest of the class.
After all students have heard the different perspectives from the people involved in the couple's decision to have prenatal testing, each student will write an essay. This essay will outline and describe the issues involved in prenatal testing. The student will use the information presented by each group to suggest advice to the couple facing the dilemma. Finally, the essay will describe some consequences that the couple might face upon taking the student's advice.
Students will go to the website for Your Genes, Your Choices, a book that was written as part of the Science and Literacy Health Project of AAAS. Have students to go to Chapter 4, Carlos and Mollie Can Have a Perfectly Healthy Baby, and read the bold text, which includes the first six paragraphs of the page.
The terms "cystic fibrosis" and "recessive" are highlighted in case students want more detailed descriptions. However, as stated in the Context, students should have an understanding of genetic diseases and inheritance patterns before beginning this lesson.
As students read Carlos and Mollie's dilemma with genetic testing for CF, have them work on the SNL student sheet, Your Genes, Your Choices.
Once students have finished reading, discuss the following questions as a class:
- Do you feel that Carlos is being overly concerned?
- Do you feel that Mollie has the right to refuse testing for CF?
- If Mollie decides not to be tested, should Carlos and Mollie still have children?
- If Mollie becomes pregnant, should she test the unborn child for CF?
- What types of options would Mollie and Carlos have to consider if their unborn child was found to have CF?
- Name some people and professionals that Carlos and Mollie can turn to for information about genetic testing, prenatal testing, and CF so that they can make an informed decision.
Write the suggestions on the board. The list should include a genetic counselor, a doctor, a religious figure, a parent of a child with CF, and a person with CF. Have students divide into groups; each group will represent one of the roles listed.
- Where can you find information and resources to research the perspective of each role?
Suggestions should include the Internet, hospitals, and community members. For the religious figure, students can and should research the perspectives of different religions. They should thus go to various religious leaders as well as Christian churches, mosques, and synagogues. They should not bias their view with their own religious values and present each researched perspective in a fair and unprejudiced manner.
Give students one week to research their group's role. Provide students with the SNL student sheet, Researching Different Perspectives on Ethics and Reproduction, to guide them in their research.
The following website suggestions are included on the student sheet:
- An Interview with Genetic Counselor Jennifer Facher
- Gene Therapy and Cystic Fibrosis
- Gene Test Cuts Out Cystic Fibrosis, a BBC News article on new techniques to cut out CF gene
- Counterbalance: Where Does the Church Stand?
- Cystic Fibrosis
- Life with Cystic Fibrosis: Three Teenagers’ Perspectives
- Breathing as a Family
Using a piece of large poster board, each group of students should include the following:
- Name of professional / role (e.g. genetic counselor).
- Types of research conducted (e.g. Internet research: include website addresses, interview with Mrs. X at Y Hospital). You must have at least one resource that is not from the Internet.
- Their perspective/advice for Carlos and Mollie organized into an outline or bullets of information.
Students will then present their findings to the class. As the groups present, have students in the class fill out Information for Carlos and Mollie: Different Perspectives.
- How is the information presented helpful to Carlos and Mollie?
- Do you think that Mollie's perspective might have changed after hearing all this information?
- Do you think that Carlos' opinion to have Mollie tested might have changed after hearing all this information?
Have students write a short essay based on what they have learned about genetic testing and the ethical issues involved.
Each essay should have the following information (An Assessment Sheet has been provided for students):
- Description of what genetic testing is
- Description of the ethical issues involved in having genetic testing and prenatal testing
- Description of Carlos and Mollie's dilemma
- Description of CF
- Perspectives of different people and professionals on genetic testing and prenatal testing
- How this information is helpful to Carlos and Mollie
- The types of options that Carlos and Mollie have
- Some problems associated with genetic testing, particularly if Carlos and Mollie are Hispanic or Asian or African-American
- The options Mollie and Carlos have if Mollie gets tested and she finds out that she is a carrier for CF
- The options Mollie and Carlos have if Mollie gets tested and she finds that she is not a carrier for CF. Should they then have prenatal testing done on their unborn child?
- The options Carlos and Mollie have if they have the prenatal test done and the results are positive. What does a positive result mean for their child?
- What do you recommend that Carlos and Mollie do based on all the information presented?
Note: Consider developing a detailed rubric for assessment of the essay. There are several resources on the Internet that describe the use of rubrics in the K-12 classroom, a few of which are highlighted here.
To learn more about rubrics in general, see Make Room for Rubrics on the Scholastic site.
For specific examples of rubrics, more information, and links to other resources, check out the following sites:
- Kathy Schrock’s Guide to Everything: Assessment and Rubrics
- Assessment: Creating Rubrics
- Rubrics for Web Lessons
Finally, you can go to Teacher Rubric Makers on the Teach-nology.com website to create your own rubrics. At this site you can fill out forms to create rubrics suitable for your particular students, and then print them instantly from your computer.
Through this activity, students should have developed an understanding that using genetic and prenatal testing to facilitate or prevent pregnancy is strewn with controversies and ethical issues. The following questions will force students to think of the political ramifications associated with genetic testing, particularly as it applies to having children.
- Some people say that offering genetic testing to expectant mothers and offering the choice to not have that child is a direct attack on people with disabilities. It is like saying that people with disabilities are not worthy enough to be brought into this world. How do you react to this statement?
- If we can do genetic testing to prevent bringing a child into this world with CF, can we do genetic testing for blue eyes and blonde hair? Do the parents have the right to abort a child that does not meet their or society's standards of beauty?
- Can people with disabilities lead quality lives in the world in which we live? Do they face more impairments from their actual disability or from the way society treats them?
- The cost for many genetic and prenatal tests is great. For example, the prenatal test for Tay-Sachs is approximately $5000. If a poor expecting mother does not have insurance, does she have the right to know her baby's future through prenatal testing? Who pays for her tests?
Have students go back to Your Genes, Your Choices and read the other chapters in the book. Students can be divided into groups, each assigned to one of the chapters. They can present the scenario to the class and ask their classmates what they would do in such a situation. After a discussion led by the group members, the presenters can inform students what the patient actually did.
Students in the class can also take a survey of the entire school or their community about Carlos and Mollie's dilemma. They can take a poll about how many people think Mollie should get tested for CF vs. how many people do not think she should get tested. The survey can also include questions such as whether or not Carlos and Mollie should consider prenatal testing for CF once Mollie gets pregnant. If the results are positive, should Mollie get an abortion? This type of survey allows students to understand how the public views such a dilemma.