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Prospectus

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Genetic Privacy: Should we be concerned?

Course
2019-2020

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

This class is part of the Virtual Exchange project, which means we will have both (international) online and on-campus students. As such, that there will be students that attend our classes physically, but we will also stream the class for our virtual exchange students as well who attend from other universities. As Virtual Exchange student, you will be able to either watch the video stream during class time , or watch the recording at a later time! However, everyone is asked to actively participate in group work via the online tools like our blackboard forum and group-communication tools of your own choice. Class lectures will be uploaded and interactive elements between online and on-campus students will be part of the assignments. We are expecting students from partner universities abroad to also partake in the course.

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 17.00hrs.
For the exact timetable, please visit the following website.

Mode of instruction

Seminars and (on-line) lectures.
This class is part of the Virtual Exchange project, which means we will have both (international) online and on-campus students (i.e. Humanities Lab students). As such, there will be students that attend our classes physically, but we will also stream the class for our virtual exchange students who attend from other universities. As Virtual Exchange student, you will be able to either watch the video stream during class time, or watch the recording at a later time! However, everyone is asked to actively participate in group work via the online tools like our forum and group-communication tools of your own choice. Class lectures will be uploaded and interactive elements between online and on-campus students will be part of the assignments. We are expecting students from partner universities abroad to also partake in the course.

Course Load

This course is worth 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;

  • final assignment 46 hours.

Assessment method

Assignments and Exams:

  • Group assignment blogpost 1 (750 word, 10%)

  • Group assignment blogpost 2 (750 word, 10%)

  • Group assignment blogpost 3 (750 word, 10%)

  • Group presentation in class: (20%)

  • Final Assignment (essay) 45%)

  • Participation (in-class, online) 5%

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 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.

Resit

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.

Inspection and feedback

How and when an exam review will take place will be disclosed together with the publication of the exam results at the latest. If a student requests a review within 30 days after publication of the exam results, an exam review will be organized.

Brighstpace

For this course, we will make use of two platforms:

  • Coursera will be used as the platform for preparation, here you will be able to find videos to learn more about the week’s topic as well as literature to deepen your understanding and a small weekly preparatory discussion prompt to reflect upon the readings, share your own resources and share your first ideas on the week’s topic before class. In class, the teacher will give a live lecture on the week’s topic (virtual exchange student can watch this via a live stream, see below) and we will go through the prepared material. In the last hour, you will be working on a case study in groups. For Virtual Exchange students the group work will take place online in small groups - it will be the responsibility of the group to get in touch with each other during the week and submit the weekly assignment.

  • Brightspace will be used as the platform for uploading materials, such as comments to your group-thread on the forum and the weekly group blog-assignment.

Reading list

Course Material

Coursera

This class incorporates part of the Massive Online Online Course (MOOC) “Mind of the Universe - Genetic Privacy: should we be concerned?“. For preparation, you will use a closed-off version of this MOOC, which holds parts of the original lectures and literature, as well as added content specific to the course. Below, please find some information on the specific content you will find within the course.

Video Lectures
Each week’s module contains a number of video lectures which will give more background information, reflect on issues and show different perspectives of the debate around genetic privacy.

Readings and resources
The literature will help you to get more information on the context of the subjects discussed in each video lecture. You will find the following sections in each module:

● Required literature is meant for all students, VE and on-campus, and will form the base for your assignments and discussions in order to get to grips with the concepts and topics addressed in each module. ● Expert literature is mandatory for VE students as a compensation for missing out on in-class time. For on-campus, this is recommended. These resources are small reads that provide interesting information in order to gain a deeper insight into the topics that are addressed in each module. We ask that VE students try to bring this additional information with them when working with the on-campus students for their assignments.

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 Brightspace.

General information about uSis is available on the website

Registration Studeren à la carte and Contractonderwijs

Not applicable.

Contact

Lecturers:

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.