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GIFTY ASAMANI

SCHOOL FOR EXCELLENCE

Since the discovery of DNA by Watson and Crick in the mid-1950’s, the secret of life started to unravel. With the successful completion of the Human Genome Project in early 2001, it became even more possible for geneticists to test individuals to determine if they have any predisposition to any genetic diseases, thus, the birth of genetic testing. These are tests which use a variety of laboratory techniques to determine if a person has a genetic condition or disease or is likely to get the disease. Individuals may wish to be tested if:

1. There is a family history of one specific disease.
2. They show symptoms of a genetic disorder.
3. They are concerned about passing on a genetic problem to their children.

Therefore, you can realize that genetic testing is a great scientific tool that has the potential to save many lives and increase the quality of life for many people not only across the United States but also around the world.

The problem with this procedure is not the test itself but rather the risk associated with the dissemination (spread) of the test results. We can all agree that we love our privacy and do not wish our private information especially our medical records to be out in the public. People have been discriminated against or denied health insurance or loose health insurance or jobs due to the information recorded in their medical records.

You have been appointed by NIH (National Institute of Health) to serve on the national ELSI (Ethical, Legal, and Social Issues) committee to come up with new laws or legislatures that will protect patients and their families and keep their genetic test results private and confidential from their employers, health insurance companies and the public at large.

You will research the issues surrounding privacy in genetic testing using the websites provided in the resource section below and the PPA worksheets. Your task is to create a bulletin board or a pamphlet that will be posted or distributed at hospitals, clinics and doctors’ offices that will inform patients about their medical bill of rights in relation to genetic testing. In your bulletin or pamphlet be sure to include information about genetic testing, the pros and cons of genetic testing, and the legal and ethical implications of the test. Then, tell us your new legislatures or laws to protect patients. Your group will have to make a ten minute oral presentation of your findings.

1. You will be divided into groups of four. This is a group project.

2. You will have to follow the steps below in developing and presenting your work. Each link below will take you to the TIPS website, where you will find extended explanation for the terms. The worksheets will be given to you by the instructor. However, you may print out the worksheets on your own if you are working in the Public Library, or other place.

· Define the problem

· Gather evidence

· Identify causes

· Evaluate a policy

· Develop solutions

· Select best solution

Use these worksheets to define the problem, gather evidence, identify causes, evaluate a policy, develop solutions, and select the best solution.

3. You will create a bulletin board or pamphlet with a title and at least five visuals with captions (which explains the visuals). The pamphlet must be at least five pages long. It must contain an explanation of the existing laws regarding genetic testing and the dissemination of private information. It must also contain the pros and cons of genetic testing, as well as your proposed legislation.

4. You will conduct a ten-minute oral presentation, which will include the information you have gathered (problems, existing policies, proposed policies). Each member of the group must present at least one aspect of the project.

Note: All work except those on the worksheets must be typed.

http://www.nih.gov/sigs/bioethics/

http://www.breastcancer.org/genetics_info_pros_cons.html

http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml

http://genome.gsc.riken.go.jp/hgmis/elsi/legislat.html

http://www.geneticalliance.org/geneticissues/mediainfo/ELSIresearch.html

http://www.pnl.gov/energyscience/03-01/inside.htm

http://www.cancernetwork.com/genetics/chapter1.htm

http://www.labtestsonline.org/understanding/features/genetics-10.html

Guidelines for your bulletin or pamphlet and oral presentation are as follows:

90% +	80% +	70% +	60% +	Less than 60%
Exemplary Group presents a clear, specific understanding of the topic. All notes and worksheets required are completed on time, are extremely well organized and questions are answered accurately. High interest and excitement have led the group to an investigation that reaches far beyond the requirements. Group has read related materials and has used many sources of information for reports and or experiments. They have used their new knowledge when participating in all oral discussions. Group makes connections between past and present, cause-effect relationships, and results in the ability to make a prediction. The group’s notes, assignments, and presentations are positively organized, marvelously done, and exceeds teacher expectations.	Strong Group presents a clear, specific understanding of the topic. High interest and excitement leads the group to an investigation that reaches beyond requirements. All notes and worksheets required are completed on time, are well organized and questions are answered accurately. The group has used as more resources than required; and demonstrates new knowledge both orally and in written work and uses this knowledge in their assignments and oral presentation. New knowledge is evident when group shows connections between past and present or cause-effect relationships. Student notes, assignments, and presentations are clearly organized, carefully done, and often goes beyond teacher expectations.	Capable Group meets assignment expectations. The group demonstrates new knowledge learned in oral participation and or written tasks. The work is organized and complete. The group understood the assignments. They used the number of resources required; and organized information in all notes, assignments, and presentation. All notes and worksheets are complete, carefully done and the group meets the requirements and expectations.	Fair Group knowledge of the topic is partly understood, but not complete. The assignments, notes and worksheets are incomplete and could be organized better. Some resources have been used, but it is not clear what the group understood. Presentation is mediocre. Some of the information presented by the group was not important to the topic Group does most of what is required, but nothing more. Some of the work may not be finished. Tasks are not carefully done and the information from the resources is not used.	Limited Group use of the topic is not shown. Steps through the process were not followed. Notes, assignments and worksheets lack neatness, organization, detail and evidence of new knowledge. Work does not meet requirements. Parts are missing. Presentation is weak, or students are often not participating. Worksheets and presentation are poorly done and fall well behind the standard level of achievement. Overall, the group has failed to grasp the concepts covered in the topic

1.1 Science Standards

· S5e: Identifies problems; proposes and implement solutions; and evaluates the accuracy, design, and outcomes of

investigations.

· S5f: Works individually and in teams to collect and share information and ideas.

· S7e: Communicates in a form suited to the purpose and the audience.

1. 2. Communication Arts Standards

· E1c: Read and comprehend informational materials.

· E2a: Produce a report of information.

· E3c: Prepare and deliver a group presentation.

Having completed this WebQuest, you are now an expert on the ethical issues surrounding genetic testing and the dissemination of private information. You have examined the pros and cons of genetic testing, as well as the privacy issues involved with this highly sensitive and complex field of science and medicine. In addition, you have developed your own original public policy that you think will help to enlighten people about their rights concerning genetic testing and bioethics.