“To Test or Not to Test”- A Modern Geneticist’s Ethical Dilemma

Ms. McShall

A. Phillip Randolph HS

Introduction:

Recent advances in genetics technology include the Human Genome Research Project – allows the sequencing of DNA and the analysis of genes quickly and efficiently. The implications for this huge project include the genetic information that isolate and analyze diseased-linked genes, generate improved methods to diagnose inherited and acquired genetic diseases, and investigate treatment strategies. Such diseases being isolated include diabetes, schizophrenia, and breast cancer, among others.

However, there is a lack of understanding of these issues as it relates to ensuring that genetic information is used for the benefit of individuals and society. That is, the privacy and fair use of genetic information; responsible clinical integration of new genetic technologies ethical issues surrounding the conduct of genetic research; and professional and public education about these issues.

As the knowledge grows about the genetic basis of disease, so does the potential for discrimination and stigmatization based on information contained in our genes. Of particular concern is the fear of leasing jobs or health insurance because of a genetic predisposition to a particular disease. It has been noted that people have been discriminated against or denied health insurance, or lost health insurance or jobs because of information contained in medical records.

You have been asked to join a community activist group to research the extent of the problem today and to lobby congress for laws to prevent job and health insurance discrimination for those individuals who possibly may have a genetic predisposition to a particular disease, or is being treated for a genetic disease. Your work will have great importance to thousands of Americans today and maybe millions in the future- good luck!

The Task:

Working in groups of five, you will research the issues that involve genetic testing and privacy of information using the resources listed below, and the PPA worksheets. Each group will develop a presentation of about five minutes discussing the advantages and disadvantages of genetic testing.

Process:

Ø ·You will be divided into groups of five to undertake the task, make a presentation using a poster/display board or making a presentation using PowerPoint presentation of ten slides.

Ø ·Each group is required to organize themselves into assigned roles to complete the tasks:

§ Your teacher will select members of each group to fill each of the following roles:

§ Group Leader- Who will organize the group and coordinate the group’s effort. The leader also assists all other members in completing their tasks

§ Recorder and Secretary- Writes the results of researchers in a format that can be presented. The Recorder keeps all research materials for the
group’s use

§ Researchers- These two will look at the websites and present the data for the groups as a whole to analyze

§ Presenter- Who will describe the group’s findings to the class as a whole. The Presenter may also work with the whole group in developing a format for the presentation, which may be a poster board
PowerPoint, etc.

Ø ·Students will be required to follow the process of the Public Policy Analyst (PPA) by reviewing the following steps to guide them in the process with their group:

1. Identifying the Problem, and Worksheet #1

2. Gathering Evidence, and Worksheet # 2

3. Identify Causes of the problem, and Worksheet # 3

4. Evaluate the Policy, and Worksheet #4

5. Develop a solution to the Problem, and Worksheet #5

6. Selecting the Best Solution, and Worksheet #6

Resources:

Ethical Issues With Genetic Testing in Pediatrics -- Committee on Pediatrics

Ethical Issues in Genetic Screening and Testing, Gene Therapy, and Scientific Conduct

Ethics and Genetics: Susceptibility Testing in the Workplace

Ethics and genetic testing | Science Buzz

Genetic Testing For Alzheimer's Disease And Its Impact On Insurance Purchasing Behavior --

Genetic Discrimination and Health Insurance

Genetic testing – A World Health Organization Report

A University of Pennsylvania report of possible risks and ethical issues

Genetic Privacy And Medical Insurance

Rubric:

Criteria

Points

	4	3	2	1
PPA Policy Worksheets Steps 1-6	All questions were answered completely and rationales for the answers were clearly stated.	All questions were answered completely, but rationales for the all the answers were not clearly stated.	Not all questions were answered completely, or greater than 2 rationales for the all answers were not clearly stated.	All questions were not answered completely.	____
Power Point Presentation	- Clear and full presentation of material (10 slides) - Shows sophisticated control of elements of power point program - Demonstrates full control of language conventions	- Clear presentation of material (10 slides) - Shows control of elements of power point program - Demonstrates control of language conventions with very few mistakes	- Basic presentation of material (less than 4,5 slides) - Basic control of elements of power point program - Some errors in language conventions get in way of presentation	- Insufficient and/or unclear presentation of material - Little control of power point program - Significant errors in language conventions which get in way of presentation	____
Process: Teamwork	It is evident that a mutual effort and cohesive unit created the final product.	The team worked well together, but could have utilized each other's skills to a better degree.	The team had problems working together. Little collaboration occurred.	The final product is not the result of a collaborative effort. The group showed no evidence of collaboration.	____
Process: Originality	The ideas expressed by the body of work demonstrate a high degree of originality.	The ideas expressed by the body of work are mostly original. The group may have improved upon a previous idea.	The ideas expressed by the body of work demonstrate a low degree of originality.	There were no original ideas expressed in this project.	______
Poster board	-Illustrates strong evidence and causes of a social problem that is clear, creative and in depth. -Demonstrates high level of professional appearance	-Illustrates supportive evidence and causes of a social problem that is clear, creative. Demonstrates aspects of professional appearance	-Illustrates some evidence and causes of a social problem that is clear, -Little demonstration of professional appearance	-Little or no or unclear evidence and causes of a social problem -Unprofessional presentation	_____
Oral Report	Based on PowerPoint presentation the research is clear and well articulated.	The PowerPoint presentation is clear but the research could be more thorough.	The PowerPoint presentation is not clear and needs more research.	The PowerPoint presentation is not clear and has no research.	_____
				Total---->	_

Conclusion:

Upon completing this project you and your teammates will have examined a national social problem and how it affects people right here in the New York City. You will have exercised your higher level thinking skills by exploring the causes of this problem and developing feasible and effective solutions for the good of our community. Moreover, you will have practiced your rhetorical skills by producing an engaging and persuasive presentation with a poster that will encourage people in Harlem to be aware of a potentially damaging issue and what they could do to protect themselves, their families and their community.

Standards:

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.

Communication Arts Standards

· E1c: Read and comprehend informational materials.

· E2a: Produce a report of information.

· E3c: Prepare and deliver a group presentation.