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Updated in [March 06th, 2023]
This course, Mind of the Universe - Genetic Privacy: Should We Be Concerned?, provides an opportunity to critically reflect upon the issue of genetic privacy. Participants will explore the ethical questions that come up with the disclosure of genetic data in biobanks and through genetic tests. They will be encouraged to think about the cultural, philosophical and political tensions present in the debate around genetic privacy. Participants will identify and listen to the viewpoints and values provided by the different stakeholders that shape this debate: corporations, researchers, consumers and patients. Additionally, they will explore the issue from the unique perspective of art and culture. At the end of the course, participants will be asked to share a recommendation on how to regulate practices of disclosing genetic information, while taking into consideration the concept of genetic privacy. This advice could serve as an eye-opener for policy makers!
[Applications]
Upon completion of this course, participants will have a better understanding of the ethical questions surrounding genetic privacy. They will be able to identify and listen to the viewpoints and values provided by the different stakeholders that shape this debate. Additionally, they will be able to explore the issue from the unique perspective of art and culture. Finally, participants will be able to share a recommendation on how to regulate practices of disclosing genetic information, while taking into consideration the concept of genetic privacy. This advice could serve as an eye-opener for policy makers.
[Career Paths]
1. Genetic Counselor: Genetic counselors are healthcare professionals who specialize in providing information and support to individuals and families who have, or may be at risk for, a genetic disorder. They help patients understand their genetic risks, interpret genetic test results, and provide guidance on how to manage their health. Genetic counselors are also involved in research and policy development, and are increasingly involved in the development of new genetic technologies.
2. Bioinformatician: Bioinformaticians are scientists who use computer science and mathematics to analyze and interpret biological data. They use their knowledge of genetics, computer science, and mathematics to develop algorithms and software to analyze large datasets of genetic information. Bioinformaticians are essential for the development of new genetic technologies, and are increasingly involved in the development of personalized medicine.
3. Genetic Engineer: Genetic engineers are scientists who use genetic engineering techniques to modify the genetic material of living organisms. They use their knowledge of genetics, biochemistry, and molecular biology to modify the genetic material of organisms to create new traits or characteristics. Genetic engineers are involved in the development of new genetic technologies, and are increasingly involved in the development of personalized medicine.
4. Genetic Policy Analyst: Genetic policy analysts are professionals who specialize in the development and implementation of policies related to genetics and genetic technologies. They use their knowledge of genetics, public policy, and law to develop policies that protect the privacy of individuals and families, and ensure that genetic technologies are used responsibly. Genetic policy analysts are essential for the development of new genetic technologies, and are increasingly involved in the development of personalized medicine.
[Education Paths]
Recommended Degree Paths:
1. Genetics: Genetics is a rapidly growing field of study that focuses on the structure and function of genes, their interactions, and their role in the development of organisms. It is a multidisciplinary field that combines elements of biology, chemistry, and computer science. Genetics is a great degree path for those interested in exploring the ethical implications of genetic privacy. Recent developments in the field include the use of gene editing technologies, such as CRISPR, to modify the genetic code of organisms.
2. Bioethics: Bioethics is the study of ethical issues related to the life sciences, such as genetic privacy. It is an interdisciplinary field that draws on philosophy, law, and medicine to explore the ethical implications of advances in biotechnology. Bioethicists are often called upon to provide guidance on the ethical implications of new technologies and to advise policy makers on how to regulate them.
3. Law: Law is an important field of study for those interested in exploring the legal implications of genetic privacy. A law degree can provide a comprehensive understanding of the legal framework surrounding genetic privacy, as well as the ability to craft effective regulations and policies. Recent developments in the field include the introduction of new laws and regulations to protect the privacy of genetic data.
4. Computer Science: Computer science is an important field of study for those interested in exploring the technical aspects of genetic privacy. It is a multidisciplinary field that combines elements of mathematics, engineering, and computer programming to develop new technologies and algorithms for managing and analyzing genetic data. Recent developments in the field include the development of secure databases and algorithms for analyzing large datasets.
Course Syllabus
What is on Your Mind?
In this module, we will introduce the subject of genetic privacy. In a time in which more and more genetic material and information is being stored in biobanks, research labs and private companies, the urgency to consider the concept of ‘genetic privacy’ becomes all the more pronounced. We will discuss different practices dedicated to the disclosure and application of genetic data, and we ask you to reflect on your initial stance towards these practices. Open up Your Mind
This part of the course will stimulate you to reflect critically on the different types of practices that work with genetic data, among which the Personal Genome Project initiated by George Church. You will get familiar with the ethical questions that these practices could raise. Furthermore, you will be encouraged to think about what the concept of genetic privacy means to you personally. What actually is genetic privacy? And what are the borders of its definition? How can we define the border between individual autonomy and public interest? Where do you place this border yourself? Connect your mind
This week we will enrich the ethical debate around genetic privacy by viewing the subject from the perspective of art and culture. We will see how artworks and cultural objects can foreground the ambiguities, emotions and (cultural) assumptions often neglected in mainstream debates around biotechnological developments. Moreover, we will explore the potential of art to allow new publics to arise in the discourse around genetic research. In this module, we would like to make you aware of how your own emotions and expectations might influence your stance on the subject. From there on, you can get to a more nuanced point of view towards the issue of genetic privacy.Make up your mind
Different groups of people with sometimes opposing interests take part in the public debate around the disclosure and application of genetic data. For example, patients, consumers, researchers, corporations, or politicians. These groups, or stakeholders, bring forward diverse arguments to advocate their position. Their arguments are often formed by emotions, gut feelings and cultural values. In order to regulate the disclosure of genetic data, while taking into consideration the notion of genetic privacy, we have to identify the different stakeholders and their values present in this debate. Finalization
We have come to the final phase of this course: the phase of finalization. Make sure to have completed your policy advice and to have published it on the discussion board. And for those who did the honours track, also share with us your infographic, video or other type of visual. Feel free to post some last, concluding, remarks or insights on this week's discussion board.
