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Prospectus

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Genetic Privacy: Should we be concerned?

Course
2018-2019

Admission requirements

This course is available for students of the Humanities Lab
If you have received your propaedeutic diploma within one academic year, your academic results are good and you are a very motivated student, you may apply for a place in the Humanities Lab.

Description

Should all our genetic information be made public in order to eradicate genetic diseases from this world? Who owns your genetic data once it becomes publicly accessible? What is your responsibility to family members when you know more about genetic diseases than they do? Who decides what kind of genetic information is relevant to a person? And what does genetic privacy mean to you?

In this course we will critically reflect upon the issue of genetic privacy. We will dive into the ethical questions that come up with the disclosure of genetic data in biobanks and through genetic tests. This course encourages the participants to think about the cultural, philosophical and political tensions present in the debate around genetic privacy. The participants are invited to identify and listen to the viewpoints and values provided by the different stakeholders that shape this debate: corporations, researchers, consumers and patients. Furthermore, the participants will go off the beaten track by exploring the issue from the unique perspective of art and culture. The end assignment is to write a recommendation on how to regulate practices of disclosing genetic information, while taking into consideration the concept of genetic privacy.

Course objectives

The student:

  • will be able to signal ethical issues and controversies around genetic privacy;

  • will be able to reflect on biotechnological practices and the issue of genetic privacy by discussing art that engages with biotechnology;

  • will be able to reflect on genetic privacy from perspectives of ethical and moral frameworks;

  • will gain insights into social and cultural implications of genetic privacy by analyzing art works;

  • will broaden her/his perspective on the relationship between art, the humanities, biotechnology and society by working in interdisciplinary groups of students.

Timetable

Courses of the Humanities Lab are scheduled on Friday afternoon from 13.00 to 17.00.
For the exact timetable, please visit the following website.

Mode of instruction

Seminars and (on-line) lectures. Students will participate in the MOOC Genetic Privacy (an online learning experience freely available on the Coursera Platform. Students are asked to prepare each weekly class session by viewing the videos sessions of the MOOC before class and preparing the MOOC assignments in advance. In class we will discuss the prepared assignments and the assigned literature. Each student must write a policy advice how to regulate genetic privacy, taking into consideration the materials of the MOOC and the assigned literature.

Course Load

Total course load 5 EC = 140 hours:

  • seminars: 4 hours per week x 6 weeks: 24 hours;

  • studying the MOOC sessions: 30 hours;

  • preparing class presentation: 16 hours (reading and discussion of assigned text with group members, preparing presentation);

  • preparing final presentation: 24 hours;

  • writing of final policy advice 46 hours.

Assessment method

  • Participation and Presentations in class: 20%;

  • Final presentation: 30%;

  • Individual : policy advice 50%.

If the final grade is insufficient (lower than a 6), there is the possibility of retaking the final essay. Contact the course lecturer for more information.

Attendance

Attendance is compulsory for all meetings (lectures, seminars, excursion). If you are unable to attend due to circumstances beyond your control, notify the Humanities Lab coordinators (honours@hum.leidenuniv.nl) in advance, providing a valid reason for your absence, and hand in your weekly assignment in writing to the lecturer (if applicable). Being absent without notification and valid reason may result in lower grades or exclusion from the course.

Blackboard

Blackboard will be used for readings, shared course documents, shared documents of assignments, and panel presentations.

Reading list

To be assigned later.

Registration

Students of the Humanities Lab will be registered via uSis by the administration of the Humanities Lab. More information about registration for courses will be provided on Blackboard.

Registration Studeren à la carte and Contractonderwijs

Not applicable.

Contact

Lecturer:

Humanities Lab office: e-mail

Remarks

This course is part of the Humanities Lab programme, visit the website for more information.
Visit the Honours Academy website for more information about the Honours College.