BlockU: Medical Humanities (UGS 2255)

Lectures: Tuesdays and Thursdays, 9:1010:30am, CTIHB 459

Instructor Information

Professor Louisa Stark, PhD

Campus Address: Eccles Institute of Human Genetics, 5110B

GSLC Address: 515 East 100 South, Suite 550

Phone: 801.585.0019

Email: louisa.stark@utah.edu

Office Hours: by appointment

Professor James Tabery, PhD

Campus Address: Carolyn Tanner Irish Humanities Building (CTIHB), 411

Phone: 801.581.8362

Email: james.tabery@utah.edu

Office Hours: Tuesdays and Thursdays, 10:3012:00, and by appointment

Medical Humanities BlockU Support

Peer Mentor: Malorie Jahn, malorie.jahn@utah.edu

Librarian: Alfred Mowdood, alfred.mowdood@utah.edu

Student Success Advocate: Christine Contestable, christine.contestable@utah.edu

Course Description and Course Objectives

The spring BlockU: Medical Humanities course is the second learning community course in the BlockU: Medical Humanities program. The previous, fall course was oriented around primarily theoretical questions: Whats normal? How does society define and enforce normalcy? What cases challenge traditional ideas about normalcy/abnormalcy? The spring course is instead oriented around a very practical goal. The BlockU: Medical Humanities learning community will work in close collaboration with the experts at the Genetic Science Learning Center (GSLC), who have developed the most widely-used online resource for genetics education in the world. The task for the BlockU: Medical Humanities learning community is to design and create a module for the Learn.Genetics website that introduces the science, ethics, and personal/familial/social side of whole genome/exome sequencinga module that can be accessed and used by students, educators, and interested readers anywhere in the world.

By the end of the semester, students will:

1. Become familiar with the science, ethics, and personal/familial/social side of whole genome/exome sequencing, utilizing a variety of interdisciplinary resources.

2. Learn how to take that interdisciplinary information and translate it into a learning module that can be accessed and understood by users who have no background with the topic.

3. Draw on the expertise developed in (1) and (2) above to help design and create a module for the Genetic Science Learning Centers Learn.Genetics website that introduces and explores whole genome/exome sequencing.

Canvas

Access: www.utah.edu :: My Classes (under 'Students') :: Log-in with uNID and password :: Click on "Go to This Class" Under UGS 2250.

Material: There are a number of readings/resources for each class that are available here, which are not in the required texts.

Grading

Grades will be based on the following ten criteria:

1. Engagement with Speakers (5 points)

2. Most Pertinent Sentence/Phrase/Word Assignments 5 (3 points each, 15 points total)

3. Key Ideas Assignments 5 (3 points each, 15 points total)

4. Overarching Topic Areas Assignment (5 points)

5. Initial Individual Contribution Report (5 points)

6. Initial Small Group Report (5 points)

7. Initial Presentation to GSLC Staff (10 points)

8. Final Individual Contribution Report (10 points)

9. Final Small Group Report (10 points)

10. Final Presentation to GSLC Staff (20 points)

A+ = 100-97 C+ = 79-77

A = 96-93C = 76-73

A- = 92-90C- = 72-70

B+ = 89-87D+ = 69-67

B = 86-83D = 66-63

B- = 82-80D- = 62-60

F = 59-0

Engagement with Speakers (5 points total): 5 speakers will present to the class in the first four weeks of the semester. Students should come prepared for that class by reading the assigned material ahead of time, listen attentively to the speakers presentations, and ask questions of the speakers regarding their presentations. Students are encouraged to write down at least one question before class, based on the assigned material or other sources.

Most Pertinent Sentence/Phrase/Word Assignments (3 points each, 15 points total): For each speaker, one to two readings will be assigned to review before class. You must first carefully read those items. Then, bring to class a one-page (typed, single-spaced, 12-point font) summary that includes (a) what youve identified as the most pertinent sentence, most pertinent phrase, and most pertinent word in the reading and (b) a one-paragraph explanation of why each sentence, phrase and word were so important to the ideas presented in the reading (i.e. 3 paragraphs total). Due on Jan 14, Jan 19, Jan 26, Jan 28, and Feb 2.

Key Ideas Assignment (3 points each, 15 points total): For each speaker, identify what you thought were the 3 Key Ideas from the speakers presentation. The Key Ideas should be what you thought were the most important concepts/lessons/points from the presentation. Then, at the next class meeting, you will turn in a one-page summary of what those 3 Key Ideas were along with a one-paragraph summary for each explaining why those particular concepts/lessons/points were so important to the overall presentation. If you thought there were additional important ideas, you can list them, but dont need to write about them. Due on Jan 19, Jan 21, Jan 28, Feb 2, and Feb 4.

Overarching Topic Area Assignment (5 points): After all 5 speakers have presented, a class will be devoted to identifying the most important overarching topic areas that ran across the various topics discussed in the separate presentations. In preparation for that class discussion, you will decide what you thought were the 3 to 4 most important overarching topic areas and turn in a one-page summary identifying what those topic areas were, along with one paragraph about each explaining why those particular topic areas were so important. Due Feb 9.

Initial Individual Contribution Report (5 points): In Week 5, Small Groups will be formed to address sub-topics of the classs overall module being developed for the GSLC on whole genome/exome sequencing. Once each Small Group has identified and refined the learning objectives for their section of the module, they must divide up the labor in developing materials to address these learning objectives so that each member of the group takes responsibility for researching a particular facet and integrating it into the groups larger project/presentation. In preparation for the Initial Presentation to the GSLC, you will turn in a 2-page report explaining what you have individually contributed to your Small Groups project. Due March 3.

Initial Small Group Report (5 points): In preparation for the Initial Presentation to the GSLC, each Small Group will turn in a 3-page report that explains what the Small Group has produced and how it fits into the classs overall module. Due March 10.

Initial Presentation to the GSLC Staff (10 points): On Tuesday, March 29, the entire class will give an Initial Presentation to the experts at the GSLC. In this Initial Presentation, the groups will offer a first draft of ideas for components of a module on whole genome/exome sequencing. Several members of the GSLC will ask questions to better understand your thinking, offer suggestions for you to consider, and provide feedback. All students must contribute to the preparation for and delivery of the Initial Presentation.

Final Individual Contribution Report (10 points): After the Initial Presentation to the GSLC, the Small Groups will modify and revise their materials in light of the GSLC feedback. Each student will continue to do individual research to contribute to their Small Group. In preparation for the Final Presentation to the GSLC, you will turn in a 2-page report explaining what you have individually contributed to your Small Groups modified/revised project. Due April 14.

Final Small Group Report (10 points): In preparation for the Final Presentation to the GSLC, each Small Group will turn in a 3-page report that explains what the Small Group has produced and how they have modified/revised it in light of the feedback from the Initial Presentation. Due April 21.

Final Presentation to GSLC Staff (20 points): At the last class meeting (Wednesday, May 4), the class will deliver its Final Presentation to the GSLC staff for its vision of a module on the science and ethics of whole genome/exome sequencing.

Class Policies

Dates/Deadlines: The dates of the Assignments, Reports, and Presentations are strict. If any of the Presentations cannot be attended, a typed explanation with appropriate documentation must be given to the professors before or within one week after the exam dates. The Assignments and Reports must also be turned in on the date specified; late submissions will drop one point each day they are late.

Cheating/Plagiarism: Anyone caught cheating on an assignment will have the assignment confiscated, a zero will be given to the assignment, and the student's action will be reported to the Dean. Students are responsible for knowing and understanding the University's Code of Conduct as it pertains to plagiarism: http://www.admin.utah.edu/ppmanual/8/8-10.html. In short, when you draw upon any source (class notes, an article, a website, a textbook, etc.), you must cite that source, whether you are quoting from it directly or only paraphrasing it. The basic idea here is that you can draw on someone else's idea(s), but you cannot spin someone else's idea(s) as your own. Any Project/Presentation with evidence of plagiarism will be assigned a zero, and the student's action will be reported to the Dean.

Cell Phones and Laptops: Cell phones are prohibited during class time. If an emergency occurs and a student needs to use her/his cell phone, please leave the classroom and deal with the emergency outside. Laptops are permitted for use in class-related work during class time, but students are prohibited from accessing non-class-related material during class. If a student is caught accessing non-class-related material during class, that student will be prohibited from using a laptop in class for the remainder of the semester.

Disability Services: The University of Utah seeks to provide equal access to its programs, services and activities for people with disabilities. If you will need accommodations in the class, reasonable prior notice needs to be given to the Center for Disability Services, 162 Olpin Union Building, 801.581.5020 (V/TDD). CDS will work with you and the professor to make arrangements for accommodations. All written information in this course can be made available in alternative format with prior notification to the Center for Disability Services.

Semester Schedule

Tuesday, January 12

Topic: Introduction to Spring 2016 Course Topic, Objectives, and Process

Before Class: N/A, but be sure to read the syllabus carefully before next class

Thursday, January 14

Topic: The Science of Whole Genome/Exome Sequencing

Guest Speaker: Willard H. Dere, M.D., FACP, Professor of Internal Medicine, Division of Endocrinology and Metabolism; Director, Program in Personalized Medicine; Co-director, Center for Clinical and Translational Science

Questions to be Addressed:

How are whole genome and exome sequencing done?

How are the data from genome/exome sequencing processed?

What can and cant we learn from genome/exome sequencing in terms of actionable health information?

What types of incidental findings are available from genome/exome sequencing?To what extent do these findings contain actionable health information?

In what ways can genome/exome sequencing data be used for precision medicine?

What other reasons might people have for wanting to know information from genome/exome sequencing?

Why is the University of Utah investing in precision medicine?

Before Class: Read the material related to Dr. Deres presentation (found on Canvas)

Due: Most Pertinent Sentence/Phrase/Word Assignment for Dr. Dere

Tuesday, January 19

Topic: The Ethics of Whole Genome/Exome Sequencing

Guest Speaker: Jeffrey R. Botkin, M.D., M.P.H., Professor of Pediatrics; Associate Vice President for Research; Chief, Division of Medical Ethics and Humanities, Department of Internal Medicine

Questions to be Addressed:

What are the similarities and differences among genome/exome sequencing in the clinical, research and recreational contexts?

What are the ethical issues related to genome/exome sequencing?

What are the ethical issues related to incidental findings?

What issues/topics do individuals need to consider in order to make an informed decision about whether to have whole genome or exome sequencing for themselves in each of the above three contexts?

In what ways are these considerations different for a parent deciding whether to have genome/exome sequencing for their newborn or child who is a minor?

What issues/topics do individuals need to consider when making a decision about whether to learn incidental finding information?

What are the ethical arguments for and against learning about genetic information that wont have a health impact until sometime in the future, such as early onset Alzheimers disease?

Before Class: Read the material related to Dr. Botkins presentation (found on Canvas)

Due: Most Pertinent Sentence/Phrase/Word Assignment for Dr. Botkin

Due: Key Ideas Assignment for Dr. Dere

Thursday, January 21

Topic: First Debriefing Session

Before Class: Review your (a) Most Pertinent Sentence/Phrase/Word assignments from your preparation for the guest speakers, and (b) Key Idea assignments following the guest speaker presentations. Come to class prepared to discuss the presentations by Dere and Botkin.

Due: Key Ideas Assignment for Dr. Botkin

Tuesday, January 26

Topic: The Psychology of Genetics

Guest Speaker: Lisa G. Aspinwall, Ph.D., Professor of Psychology; Cancer Control and Population Sciences Program, Huntsman Cancer Institute

Questions to be Addressed:

What is genetic essentialism?

What issues does genetic essentialism raise in terms of what people may think about what science can or cant tell us?

Does information gained via sequencing and associated bioinformatics technologies reinforce or challenge genetic essentialism or reductionism?

In what ways might (or do) people change (or consider changing) their behaviors in light of genetic information?

Before Class: Read the material related to Dr. Aspinwalls presentation (found on Canvas)

Due: Most Pertinent Sentence/Phrase/Word Assignment for Dr. Aspinwall

Thursday, January 28

Topic: Genetic Counseling about Whole Genome/Exome Sequencing

Guest Speaker: Karin M. Dent, M.S., CGC, Assistant Professor of Pediatrics; Graduate Program in Genetic Counseling

Questions to be Addressed:

How do you describe whole genome or exome sequencing to patients/families to help them understand these techniques?

What topics/issues do you discuss with patients/families to inform their decision-making process about whether to have a sequencing test performed? (For example: When you learn genetic information about yourself, you often learn something about other family members; e.g., BRCA1 testing)

What issues do you discuss with patients/families with respect to deciding whether to learn about incidental findings that may have immediate or long term health implications?

In what ways do you help patients/families understand the results of sequencing tests both results that provide medically actionable information and those that don't?

Before Class: Read the material related to Genetic Counselor Dents presentation (found on Canvas)

Due: Most Pertinent Sentence/Phrase/Word Assignment for Genetic Counselor Dent

Due: Key Ideas Assignment for Dr. Aspinwall

Tuesday, February 2

Topic: Race and Genetics

Presenter: Dr. Tabery, Associate Professor of Philosophy, Division of Medical Ethics and Humanities

Questions to be Addressed:

What is the historical relationship between genetic research and race?

How has the concept of race evolved in light of genetic research?

Does information gained via sequencing/bioinformatics technologies reinforce or challenge the concept of race?

How has race been incorporated into precision medicine?

What are contemporary concerns about race and precision medicine?

Before Class: Read the material related to Dr. Taberys presentation (found on Canvas)

Due: Most Pertinent Sentence/Phrase/Word Assignment for Dr. Tabery

Due: Key Ideas Assignment for Genetic Counselor Dent

Thursday, February 4

Topic: Second Debriefing Session

Before Class: Review your (a) Most Pertinent Sentence/Phrase/Word assignments from your preparation for the guest speakers, and (b) Key Idea assignments following the guest speaker presentations. Come to class prepared to discuss the presentations by Aspinwall, Dent, and Tabery.

Due: Key Ideas Assignment for Dr. Tabery

Tuesday, February 9

Topic: Topic Areas and Group Formation

Before Class: Review your (a) Most Pertinent Sentence/Phrase/Word assignments from your preparation for all 5 speakers, and (b) Key Ideas assignments following all 5 speakers. Come to class prepared to discuss the presentations by all 5 speakers.

Due: Overarching Topic Area Assignment

Thursday, February 11

Topic: Begin identifying Learning Objectives

Before Class: TBA

Tuesday, February 16

Topic: Continue defining Learning Objectives

Before Class: TBA

Thursday, February 18

Topic: Silent Conversation about Learning Objectives

Before Class: TBA

Tuesday, February 23

Topic: Begin drafting Educational Materials

Before Class: TBA

Thursday, February 25

Topic: Library Research Day, with Alfred Mowood

Location: Marriott Library 1009

Before Class: TBA

Tuesday, March 1

Topic: Continue drafting Educational Materials

Before Class: TBA

Thursday, March 3

Topic: Continue drafting Educational Materials

Before Class: TBA

Due: Initial Individual Research Report

Tuesday, March 8

Topic: Continue drafting Educational Materials

Before Class: TBA

Thursday, March 10

Topic: Continue drafting Educational Materials

Before Class: TBA

Due: Initial Small Group Report

Tuesday, March 15 and Thursday, March 17

Spring Break

Tuesday, March 22

Topic: Practice/Rehearsal for Initial Presentation

Before Class: TBA

Thursday, March 24

Topic: Research/Planning for Initial Presentation

Before Class: TBA

Tuesday, March 29

Topic: Initial Presentation for GSLC staff

Before Class: Finalize Initial Presentation in light of practice/rehearsal session and feedback on it

Thursday, March 31

Topic: Initial Presentation Debriefing

Before Class: TBA

Tuesday, April 5

Topic: Modify/Revise Educational Materials in light of GSLC input

Before Class: TBA

Thursday, April 7

Topic: Library Research Day, with Alfred Mowood

Location: Marriott Library, 1009

Before Class: TBA

Tuesday, April 12

Topic: Modify/Revise Educational Materials in light of GSLC input

Before Class: TBA

Thursday, April 14

Topic: Modify/Revise Educational Materials in light of GSLC input

Before Class: TBA

Due: Final Individual Research Report

Tuesday, April 19

Topic: Modify/Revise Educational Materials in light of GSLC input

Before Class: TBA

Thursday, April 21

Topic: Modify/Revise Educational Materials in light of GSLC input

Before Class: TBA

Due: Final Small Group Report

Tuesday, April 26

Topic: Practice/Rehearsal for Final Presentation

Before Class: TBA

Wednesday, May 4 (8:0010:00am): Final Presentation to the GSLC staff

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