To Fund or Not To Fund...
An Internet WebQuest on The Human Genome Project

Introduction | The Task | The Process & Resources | Conclusion | Student Dictionary

Introduction

With the recent cloning of a sheep named Dolly and news about bacteria that are resistant to drugs, genetics has been a topic discussed by many. But before a sheep was cloned or serious research involving genetically altered bacteria was performed, a project involving the mapping of the entire human genome had began. An ongoing research project that started in the 1980's is the Human Genome Project (HGP). Scientists are attempting to map all the genes, or genome, of a human being. This means that they will know the genetic sequence for the color of your eyes and hair to the number of fingers and toes you have. The government is funding the project and currently has spent $303.2 million on the research.

Along with this knowledge of knowing how to program every aspect of a human being comes a lot of controversy, especially when the project is publicly funded. While knowing the genetic makeup for a human can help some, it can cause serious implications for others. The Human Genome Project may provide a way to determine if a person has a genetic disease but how that person and others use this information causes debate. Insurance Companies can grant or deny medical insurance if they know the possibility of a client having a genetic disease. While this may help the insurance company save money, it's denying the client insurance coverage and proper medical treatment. The issues of privacy and morality also come into play when discussing the Human Genome Project.

Due to all this controversy and different points of view, this WebQuest has been created. Through the research of Internet sites, you will form an opinion on the Human Genome Project with a group of fellow students. Each of you will be assigned a different point of view and after discussing and learning others views, you will form a collective opinion.




The Quest

Is mapping the human genome ethical? What new medical discoveries can be made with the knowledge of the human genome? Can debilitating genetic diseases be cured with the knowledge of DNA sequences? What effect does this new knowledge have on society? Does everyone benefit from knowing the sequence human DNA? Are certain people at a disadvantage is their genome is made public? With these questions in mind, your group's task is to answer the question of, 'Should government funding be allowed for the Human Genome Project?'





The Process and Resources

In this WebQuest you will be working together with a group of students in class. Each group will answer the question, 'Should government funding be allowed for the Human Genome Project?' As a member of the group you will play the role of one of four people: 1) A member of a pregnant couple who has a genetic history of mental retardation in their family, 2) a lawyer of the American Civil Liberties Union, 3) a scientist/doctor or 4) a representative of a health care provider. You will research your role on the web by looking at Internet sites related to your character's point of view. Some of the sites may be a bit difficult to understand since they are dealing with scientific issues and are used by professionals in the field of genetics. Feel free to use the online Webster dictionary or your biology textbook if you get caught up in the language.

Everyone will read some background information on the biology of genetics and the Human Genome Project (HGP) before you each start researching your role. After you have a common background and have looked into your character's point of view, your group will reach a consensus as to if the Human Genome Project should be governmentally funded.

Phase 1 - Background: Something for Everyone

Before you research each of your own roles, you all need to have a common background on the Human Genome Project (HGP). You need to know the goals and aims of the HGP and the genetic theories and technology behind the sequencing of the genome. You will also want to be aware of other points of view than the one that you are assigned. Although you do not need to extensively know the others roles, you want to have a general understanding of where they are coming from and issues that they may bring up when your group discusses if the HGP should be governmentally funded. Use the 4 Internet sites listed below to get a general understanding of the HGP and the issues regarding the project.

Phase 2 - Looking Deeper from Different Perspectives

INSTRUCTIONS:

1. Each person of your group of four will be assigned one of the four roles:
- A member of a pregnant couple who has a genetic history of mental retardation
- A lawyer for the American Civil Liberties Union
- A Scientist/ Doctor
- A representative of a health care provider

2. Read through the background files and the files specifically listed for your role. If you print out the files, underline the passages that you feel are the most important. If you look at the files on the computer, copy sections you feel are important by dragging the mouse across the passage and copying / pasting it into a word processor or other writing software.

3. Note: Remember to write down or copy/paste the URL of the file you take the passage from so you can quickly go back to it if you need to to prove your point.

4. Be prepared to focus what you've learned into one main opinion that answers the big question. After researching your character, you should have an opinion for that role. The opinion for the role you choose may not be your own personal opinion which is o.k. You need to be able to back your character's opinion with facts from the Internet sites that you researched- your own opinion is not enough evidence or support for your character's decision.

Pregnant Couple with a genetic history of mental retardation

As a member of a pregnant couple with a genetic history of mental retardation, you see the Human Genome Project both as a hope and a hindrance. The project may sequence the genes responsible for the mental retardation in your family and your child could receive gene therapy to cure the problem. But there may not be a cure for the genetic disease that you carry and your child could exhibit the symptoms of mental retardation. Knowledge of his genome may cause him to be discriminated against from insurers, employers and other organizations. You are deciding if you want your fetus to be genetically tested for mental retardation and if it is worth the consequences or rewards that may arise from the results. As a member of this couple you must decide if you should have the genetic tests performed and what implications the HGP would have on the results of these tests. You must ultimately decide if the government should fund the HGP. The sites listed below pertain to your dilemma and genetic testing. After researching these sites, you should form an opinion as to if you support the funding of the HGP or think that it should be withdrawn. Questions that you should consider when researching these sites:

1. What are the benefits and costs to knowing the results of a genetic test?
2. How will the knowledge of your child's genome affect him and his situation in life?
3. Do you think it is better to know that your unborn child has a genetic disease before his birth or do you think that it is better to learn of your child's condition when he is born?
4. Will the results of the genetic test make you consider aborting the pregnancy or giving the child up for adoption?

Lawyer of the American Civil Liberties Union

As a lawyer for the American Civil Liberties Union (ACLU), you are an advocate for individual rights. When dealing with the Human Genome Project you see possibilities of indivduals' rights being violated, such as their privacy. If an individual's genome is made public knowledge, they may be discriminated against by insurers, employers and other organizations that have an impact on the individual's life. But you are also aware of what genetic testing and research of the human genome could mean to many people such as curing genetic diseases and extending the quality of someone's life. As a lawyer for the ACLU, you must decide if the government should fund the HGP. The sites listed below pertain to your profession and how the HGP affects individual rights and current legislation in congress. After researching these sites, you should form an opinion as to if the HGP should or should not be publicly funded. Questions that you should consider when researching these sites:

1. How much authority should the government be allowed to control information gained from genetic testing?
2. Should the HGP be publicly funded if not all of the public benefits from the results of the research?
3. Should only the individual's rights be considered when proposing legislation for genetic privacy or should we take into account the effect genetic privacy will have on insurance companies and employers?

Scientist/ Doctor

As a scientist and doctor, you are excited about the Human Genome Project. You can see endless possibilities of what the genome can bring to the medical community. But you are also concerned about the ethical issues that surround the genome and what it could mean to some of your patients. As a doctor and scientist, you must determine if the HGP should be funded by the government. The links listed below are sites that pertain to your profession and issues that affect you as a doctor. After researching these sites, you should form an opinion as to if you support the HGP funding or think the government should withdraw the funds to the HGP. Questions that you should consider when researching these sites:

1. How will this impact my patients? (Remember- you treat ALL types of patients including the mentally retarded and those with histories of genetic disease)
2. What kind of medical advances can be made with the knowledge of the Human Genome?
3. If the genome creates implications for some but benefits for others, do the benefits to some out weigh the costs to others?

Representative of a Health Care Provider

As a representative for a health care provider, such as an insurance agency, you see the Human Genome Project as a way to screen prospective clients and find out if they are a sound investment or not. Genetic tests can reveal if an individual has a history of a genetic disease or other illness which may cost the company a lot of money in treatment bills. But you also are aware of an individual's right to privacy and know that not all genetic diseases are ever physically shown- the individual just carries the genes for the disease. As a representative for a health care provider, you must decide if you support the government funding for the HGP or think that it should be withdrawn. The links listed below are sites that pertain to your profession and current legislation that affects the availability of prospective client's genetic tests. After researching these sites, you should form an opinion as to if the government should or should not fund the HGP. Questions that you should consider when researching these sites:

1. How will the knowledge of someone's genome affect the insurance company and business decisions pertaining to that individual?
2. Are genetic tests always accurate and reveal that an individual will definitely show symptoms of the genetic disease they were tested for?
3. Should I just consider what is good for the company and not for the individual? Should I be ethically and morally aware of the impact my decisions may have on another person?

Phase 3 - Debating, Discussing, and Reaching Consensus

You have all gained a different perspective on the Human Genome Project through researching the Internet. You should now regroup with the other three members of your team and exchange information that you have learned through your research. The four of you must reach a consensus and answer the question of 'Should government funding be allowed for the Human Genome Project?' Each of you will bring a certain viewpoint to the answer: some of you will agree and others disagree. Use information gained from your particular web sites and present your informed opinion to the rest of the group. Everyone's opinion and point of view should be heard and considered when reaching a group answer. Collectively you will reach a compromise and you should write out an answer that everyone can live with.

Phase 4 - Real World Feedback

You and your teammates have learned a lot about the Human Genome Project and its affects on different people in different situations. Now you are going to apply what you have learned to the real world by informing your congressman your group opinion on government funding for the HGP. As a group you will write a letter that contains your informed and well thought out opinion and evidence and facts that support your opinion. The process to doing so is:

1. Begin your letter with a statement of who you are and why you are writing your message to the congressman.

2. Give background information on the Human Genome Project that shows you understand the purpose of the research and have formed an educated opinion.

STATE THE QUESTION (SHOULD GOVERNMENT FUNDING BE ALLOWED FOR THE HUMAN GENOME PROJECT?) AND YOUR GROUP'S ANSWER.

3. Each person in your group should write a paragraph that gives two good reasons supporting the group's opinion. Make sure to be specific in both the information (like where you got it from on the Web) and the reasoning (why the information proves your group's point).

4. Make sure that you proofread your letter and use the correct letter format. You want the congressman to take your opinion seriously. Also make sure that you have correctly addressed the email letter. Use the link below to make contact. Send your letter and make sure your teacher gets a copy.

E-mail Addresses of Your Congressmen

Click here for how your letter will be evaluated





Conclusion

The four of you have extensively researched the Human Genome Project and each of you have become an expert on a certain aspect of the HGP. You were able to exchange your points of view and come to a group decision as to if the government should fund the research. Through each other you have learned a little more about the project and the implications that it has on a variety of people. Nothing is ever clear, cut and dry and there are always differing opinions on a subject. Even in a subject that seems as logical and straight forward as biology, there is constant controversy and disagreement. There are many aspects that still have to be explored in the Human Genome Project and other controversial issues in science. Through proper research and forming of intelligent opinions, we can reach a consensus on issues that affect us all.
For Teachers
 
To see how this WebQuest can be applied to your classroom, what standards it meets, variations on the lesson and other aspects to the WebQuest look over the Teacher Lesson Plan for To Fund or Not to Fund...
This document was created by Samantha Strauss, a student at the University of Richmond studying in the department of Education. She completed the original version of this document as a project for the class EDUC 343: Technology in Education, during the spring semester of 1999.

Assistance for this project was provided by Dr. Patricia Stohr-Hunt. She has maintained and revised this document as an interactive resource for educators, students and parents. All inquiries and comments regarding this document should be mailed to her at the following address: pstohrhu@richmond.edu.

Site updated on February 20, 2008.