This document outlines a capstone project for incorporating bioethics into a high school science classroom. It includes objectives such as having students work in groups to complete authentic tasks on various bioethical issues. Examples of projects described are having students take on roles related to the Tuskegee Syphilis study and complete a genetics counseling case study. Throughout the year, students would keep an ethics journal to reflect on science articles addressing ethical issues. The goal is for students to see science as a human endeavor subject to biases and personal values.

1. Incorporating Bioethics in the science classroom A Capstone Project Janelle Roberts Wilkes University 2010

3. Science standards ask that students see and experience science as a human endeavor, one that is subject to fallacy and error, and where scientific judgment may be impacted by an individual’s personal values.

5. Student Impact

6. Objectives Student Centered Aside from the initial introduction of the topic as well as the details of the project, students will be working in groups, teams or pairs to complete the tasks of each project. In certain assignments, students will be allowed to choose the roles that they participate in. Using Information Each ethical issue will ask students to gather information and discern what is relevant and what is not. This information is critical because students will not be allowed to make final decisions based on their personal feelings alone. They will always need to support their reasoning with the information they have gathered. Teacher as Facilitator I will be guiding students through their learning and will NOT give them my personal opinion on any issue they are working with. I will lead them to new sources of information and make suggestions as to the types of questions they need to be asking but will refrain from giving out answers. It is likely that class discussions about bioethics will lead to some emotional comments. As facilitator, it will be necessary to remind students of the facts that we KNOW and make decisions based on that rather than making conclusions based on assumptions.

7. Objectives cont. Higher Order Thinking Each bioethics project students encounter will ask them to learn or become familiar with a basic set of skills and knowledge but from there they will need to analyze those facts and synthesize a decision, action or authentic artifact that demonstrates their understanding of the topic. Interdisciplinary The introductory bioethics unit will involve the Tuskegee Syphilis Study as well as the controversy surrounding the use of HeLa cells. Both case studies make historical connections to racism and equality. There also exists similarities between these experiments and those conducted by the Nazis during WWII and their misconceptions of the eugenics movement. Collaboration Students will be working in teams to create common performance assessments. For example, in the Lakeville Landfill Scenario, students will gather information and research questions on their own and then come together with the rest of their group to review what they have learned. From here, they will make a unanimous decision to either open or close a school and base their rationale on three relevant facts.

8. Objectives cont. Performance Based Assessments/Authentic Tasks Performance tasks included in this capstone are: Public Service Announcement, Bulletin, Genetic Counselor Report, Cover Letter, PowerPoint Presentation, Mock Trial, Business Letter Multiple Sources of Information Students will be expected to gather their information not only from Google searches but from organizations such as the Dolan DNA Learning Center, National Institutes of Health, local business and community members and supplemental journal readings available through our school library Technology Integration Anticipated technology includes internet research, Microsoft PowerPoint and Publisher, “Cover it Live”, Blogging via teacher website, use of student Diigo accounts, Audacity software for PSA production, online magazine articles and radio broadcasts available through NPR.

9. Objectives cont. Learning How to Learn Most, if not all, of these projects are inquiry based in nature and thus require students to formulate their own questions. The research and answers to the questions then becomes more meaningful since students are responding to their own inquiries. Repeated exposure to this type of pedagogy encourages students to want to learn for themselves. Addressing the Learning Styles of all Learners Within each project students have the opportunity to act as researchers, develop written reports, and narrate presentations and design letterheads and presentations. The various components will appeal to auditory, visual, kinesthetic and hand-on learners. Students Acting as Professionals In the Lakeville Landfill Scenario, students assume the role of school board members who must address their community about whether or not they will close a school near a toxic landfill. In the Genetics Project, students will become genetic counselors that assemble a professional report for prospective parents that are carriers for an assigned genetic disorder.

10. Implementation The time requirements are spread across the school year, with students encountering ethical issues at key units in the curriculum. The first and third tasks require 5-7 days to complete. Students are given two weeks to complete the genetics task since the work is conducted independently, outside of school and because there is a peer-sharing component.

11. Projects, Assessments and Rubrics (par) Tuskegee Study and HeLa Ethics Case 1: Fair Treatment of Test Subjects in Experimentation Day 1 Students are introduced to the study of ethics. They will hear that although we will ask tough questions, our discussions will not be “free-for –alls” . As a class we will examine the facts that are given to us, and as in all inquiry, decide what we know, what we need to know and where we should go from there. Days 2 and 3 Students will be instructed to read an article on HeLa cells and listen to two radio podcasts regarding the Tuskegee Syphilis Study. A class discussion will follow that includes a background of these two topics. Henrietta Lacks Story Remembering Tuskegee Tuskegee Apology HeLa cells undergoing mitosis. Nuclei are in red and the blue-stained protein is one that regulates cell division. Matthew Daniels, Wellcome Images

13. Possible questions for discussion:

14. In what ways were the practices of the Tuskegee study racist?

15. Would you have made the same ethical decisions as Eunice Rivers?

16. Despite the guidelines and regulations created to protect human subjects, do you think this will assure that future research causes no ethical concerns?

17. If the PHS had obtained informed consent from the patients would this have erased questions about the study being ethical?The blog will not be a graded assignment. Students will not be required to participate, instead, it will be a voice for those students who would like time to discuss the topic further.

18. PAR – cont. Days 4,5,6 – Project Introduction and Creation After completing all readings and participating in the discussions, students will assume one of the following roles and complete the task that accompanies it. 1. You are one of the Public Health Service doctors providing medical care to the patients of the Syphilis Study. Recently, the PHS has called for your resignation, claiming you have acted unethically. Compose a business letter to your superiors defending your actions in the study. Provide at least 3 reasons why you think your judgments were ethically sound. You may also write this letter from the view of Eunice Rivers. 2. You are the family member of a man who is participating in the Syphilis Study. You have just learned that treatment is being withheld from the patients. Create a public service announcement urging the public to question the nature of the study. Submit a written draft of your message and include at least 3 facts that support your claim that the study is unethical.

19. Case 1 Rubric - Letter

20. Case 1 Rubric - PSA

21. PAR – cont. Understanding Genetic Testing Ethics Case 2: To Have a Family? Prior to completing this project, students will have completed background instruction on pedigrees, punnett squares, genetic probabilities and will have had a general survey of human genetic disease. This project will provide them the opportunity to demonstrate what they know as well as decide whether or not to continue with planning a family after interpreting the results of a genetic report. Students will choose one scenario (see next slide) from the list provided and conduct independent research to create a technical report that includes the causes, symptoms and treatments for the disease. They will also, based on the family history and their knowledge of genetics, identify the probability that a child will have the disease in question and convey this through punnett squares and pedigrees. Students are instructed to NOT make a suggestion as to have children or not. They are strictly reporting on the facts. Accompanying their report, is a cover letter that briefly outlines their findings. It also provides their company’s name in letterhead, business address, and contact information.

23. Gloria, 19, is married to Robert, 21, and they wish to start a family. Both of Gloria's parents are healthy (Sonia, 39, and Todd, 40). However, Gloria's grandfather died at the age of 43 after being diagnosed with Huntington's disease. Gloria and Robert have many questions and seek out a genetic counselor for information. They would like to know if they could be carriers and the chance that their children might be infected.Income: $52,000. Insurance: both, through employers

24. You and your wife have just lost a child to Tay-Sachs disease. You were referred to a genetic counselor before deciding to have more children.Your income: $75,000 Insurance: none

25. Jim, 32, and Tammy, 28, have had two healthy children: Twila, age 3 and Terry, age 5. They have, however, recently discovered some background news about Tammy's family that concerns them. They have just found out that a brother of Tammy's, who was confined to a wheelchair by age 10, has Muscular Dystrophy. They would love to have a family of four children. Genetic counseling is available.Income: $80,000 Insurance: 50% coverageThis is not a complete list

26. PAR – cont. 4. The teacher will collect the student’s counselor reports. They will be reviewed for evidence of clarity, organization and content. They will not, however, be graded at this time. The following day, the teacher will randomly distribute the reports so that no student has his or her own project. 5. The students will now take on the role of the parents described in the scenario and review the genetic counselor’s report. From this information they will make a decision as to whether or not they choose to continue with planning a family. Once a decision has been made, the student will write a letter to any member of their family explaining their reasoning. In this letter, they must show evidence of the following: a. consideration to the family’s income and insurance coverage b. a sophisticated understanding of the genetics report by citing example information

27. Genetic Counselor Report/Letter Rubric

29. Students will engage in both flexible and dynamic grouping, collaborate on a variety of authentic tasks and create meaningful artifacts as a way to demonstrate their knowledge and understanding.

30. Students will be presenting their work to the class from the perspective of the school board. The audience will participate in a “Cover it Live” discussion. Here they will make comments from the perspective of community members as to whether or not they support the decision of their school board. This task will not be graded but will allow the teacher to gauge the level of understanding in the classroom as well as challenge students to be active listeners.

31. Their work concludes with a peer/self assessment.

32. The scenario and instructions can be found at the link below.Lakeville Landfill

35. Resources and Acknowledgments www.diigo.com Student accounts used for organizing internet research www.coveritlive.com A teacher account is needed and discussion times must be set up in advance. Student laptops, headsets and connection to school network Access to teacher website Microsoft Publisher Audacity software Microsoft PowerPoint Clipart courtesy of discovery education Information on Ethics courtesy of the Online Ethics Center

36. Readings and Radio Broadcastings Henrietta Lacks Skloot, R. (2000, April). Henrietta's dance. John Hopkin's Magazine, Tuskegee Syphilis Study Morning Edition, NPR. (Producer). (2002). Remembering tuskegee. [Web]. Retrieved from http://www.npr.org/templates/story/story.php?storyId=1147234 All Things Considered, NPR. (Producer). (1997). Tuskegee apology. [Web]. Retrieved from http://www.npr.org/templates/story/story.php?storyId=1039887