Mind of the Universe - Genetic Privacy: should we be concerned? from Coursera

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 challenge with Robert Zwijnenberg (Professor in Art and Science Interactions) you will critically reflect upon the issue of genetic privacy. You will dive into the ethical questions that come up with the disclosure of genetic data in biobanks and through genetic tests. This course encourages you to think about the cultural, philosophical and political tensions present in the debate around genetic privacy. You 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, you will go off the beaten track by exploring the issue from the unique perspective of art and culture. After a lot of thinking, supplementing, deleting and adjusting, you 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. Your advice could serve as an eye-opener for policy makers!

This online learning experience is a spin-off of The Mind of the Universe documentary series created by the Dutch broadcasting company VPRO and professor Robbert Dijkgraaf, Princeton University. A number of universities in the Netherlands have used the open source material of the documentary series as a starting point to create similar experiences.

What's inside

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.

Good to know

Know what's good

, what to watch for

, and possible dealbreakers

Engages with the intersection of science, technology, and culture, fostering critical thinking skills that can benefit decision makers and the general public

Examines the ethical implications of genetic data disclosure and its impact on individuals, families, and society

Provides a unique perspective on genetic privacy by incorporating insights from art and culture

Involves learners in the process of developing policy recommendations on the regulation of genetic data, fostering a sense of civic responsibility

Suitable for learners with a background in ethics, biology, social sciences, or related fields

Requires an interest in contemporary scientific and cultural debates to fully appreciate the course content

Reviews summary

Highly praised genetics course

According to students, this course on genetic privacy is amazing, engaging, and well laid out. Students are largely positive about this course and say that it is well received due to its great instructor and the facts from numerous venues they present.

Learners learned a lot from the provided information.

"Great information on a topic that I have never really given much attention to."

"This course was amazing."

"I absolutely LOVED this course and I was sorry to see it end."

Learners appreciated the instructor's work.

"Great instructor and the course is well laid out."

"It provided facts from numerous venues and actually sought students opinions."

"I absolutely LOVED this course and I was sorry to see it end."

Learners liked the course structure and materials.

"Great information on a topic that I have never really given much attention to."

"This course was amazing."

"This is a great and short opportunity to delve into yourself and the basis of your own decisions."

Activities

Be better prepared before your course. Deepen your understanding during and after it. Supplement your coursework and achieve mastery of the topics covered in Mind of the Universe - Genetic Privacy: should we be concerned? with these activities:

Read 'The Immortal Life of Henrietta Lacks'

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Gain insights into the ethical implications of genetic research by reading this New York Times best-seller.

View The Immortal Life of Henrietta Lacks on Amazon

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Purchase or borrow a copy of the book.
Set aside time each day to read the book.
Take notes or highlight important passages as you read.
Discuss the book with friends, family, or classmates.

Review ethical principles in genetics

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Prepare yourself for course materials by reviewing some basic ethical principles used in the field of genetics.

Browse courses on Genetics

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Reread notes or chapters on ethical principles in genetics from previous coursework.
Watch videos or documentaries about ethical issues in genetics.
Complete practice questions related to ethical principles in genetics.

Explore online resources on genetic privacy

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Supplement your understanding of genetic privacy by following tutorials from experts in the field.

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Search for online tutorials on genetic privacy and ethics.
Choose a tutorial that aligns with your interests and learning goals.
Follow the tutorial steps and complete any associated activities.
Take notes or summarize the key takeaways from the tutorial.

Four other activities

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Show all seven activities

Practice analyzing genetic privacy case studies

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Strengthen your analytical skills by working through case studies that explore the complexities of genetic privacy.

Browse courses on Genetics

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Find case studies on genetic privacy from reputable sources.
Read each case study carefully and identify the key ethical issues.
Develop your own analysis and recommendations for each case study.
Share your analysis with others and discuss different perspectives.

Join a study group to discuss genetic privacy issues

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Engage with fellow learners and exchange ideas by participating in a study group focused on genetic privacy.

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Find or form a study group with other students taking this course or interested in genetic privacy.
Choose a topic related to genetic privacy to discuss and prepare for the meeting.
Meet with your study group to share your thoughts and insights.
Take turns leading the discussion and facilitating the exchange of ideas.

Write a blog post on your perspective on genetic privacy

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Solidify your understanding of genetic privacy by expressing your thoughts and ideas through writing.

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Brainstorm ideas for your blog post related to genetic privacy.
Research and gather information to support your观点.
Write a draft of your blog post.
Edit and revise your blog post for clarity and conciseness.
Publish your blog post on a platform of your choice.

Volunteer as a mentor for students learning about genetics

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Deepen your understanding of genetic privacy by sharing your knowledge with others and supporting their learning journey.

Browse courses on Genetics

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Reach out to organizations or schools that offer mentoring programs in genetics.
Complete any necessary training or background checks required by the organization.
Be paired with a mentee and provide guidance and support on topics related to genetics and genetic privacy.
Meet with your mentee regularly to discuss their progress and provide feedback.

Career center

Learners who complete Mind of the Universe - Genetic Privacy: should we be concerned? will develop knowledge and skills that may be useful to these careers:

Genetic Counselor

Genetic Counselors provide information and support to individuals and families affected by genetic conditions. The course "Genetic Privacy: should we be concerned?" deepens their understanding of the ethical, legal, and social implications of genetic testing and counseling. By gaining insights into genetic privacy concerns, they can effectively guide patients and families in making informed decisions and navigating the complexities of genetic information.

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Clinical Geneticist

Clinical Geneticists diagnose and manage inherited genetic disorders. "Genetic Privacy: should we be concerned?" provides them with a comprehensive understanding of the ethical and cultural implications of genetic testing and counseling. By gaining insights into genetic privacy concerns, they can effectively communicate with patients and families, ensuring informed decision-making and safeguarding patient rights.

See salaries and explore the career path for Clinical Geneticist

Bioethicist

Bioethicists analyze the ethical implications of biological research and healthcare practices. "Genetic Privacy: should we be concerned?" examines ethical questions surrounding genetic data disclosure, providing Bioethicists with in-depth knowledge of the complex ethical issues in genetic research and its impact on individuals and society.

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Healthcare Ethicist

Healthcare Ethicists analyze and provide guidance on ethical issues in healthcare. "Genetic Privacy: should we be concerned?" deepens their understanding of the ethical dilemmas and controversies surrounding genetic information. By gaining insights into genetic privacy, they can assist healthcare professionals, policymakers, and patients in making ethical decisions and navigating the complex landscape of genetic research and healthcare.

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Data Scientist

Data Scientists analyze and interpret large datasets to extract meaningful insights. "Genetic Privacy: should we be concerned?" familiarizes them with the ethical considerations and privacy concerns surrounding genetic data. By understanding the challenges and responsibilities in handling sensitive genetic information, Data Scientists can develop ethical and responsible data analytics practices.

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Policy Advisor

Policy Advisors research and analyze policy issues to inform decision-making. The course "Genetic Privacy: should we be concerned?" provides them with a deep understanding of the ethical, legal, and social implications of genetic research and its impact on public policy. By gaining insights into genetic privacy concerns, they can effectively advise policymakers on the development and implementation of ethical and responsible policies governing the use and sharing of genetic information.

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Biostatistician

Biostatisticians apply statistical methods to biological and medical data. The course "Genetic Privacy: should we be concerned?" provides Biostatisticians with insights into the ethical and cultural considerations in the analysis and interpretation of genetic data. This knowledge empowers them to design and conduct ethical research studies, ensuring the responsible use of genetic information.

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Health Informatics Specialist

Health Informatics Specialists design and implement technology solutions for healthcare organizations. The course "Genetic Privacy: should we be concerned?" provides them with an understanding of the ethical considerations and privacy concerns in the management and use of genetic data. By gaining insights into the challenges and responsibilities of handling sensitive genetic information, Health Informatics Specialists can develop and implement ethical and secure health information systems.

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Health Policy Analyst

Health Policy Analysts develop and evaluate policies that affect healthcare systems. The course "Genetic Privacy: should we be concerned?" provides them with a comprehensive understanding of the ethical, legal, and social considerations in the development and implementation of genetic health policies. By gaining insights into genetic privacy concerns, they can contribute to the creation of policies that balance the potential benefits of genetic research with the protection of individual privacy.

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Patent Attorney

Patent Attorneys specialize in intellectual property law, including patents for biotechnology inventions. "Genetic Privacy: should we be concerned?" provides them with valuable insights into the ethical and legal considerations surrounding the patenting of genetic information. Understanding the complexities of genetic privacy can assist them in advising clients on the ethical implications of their inventions and ensuring compliance with intellectual property and privacy laws.

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Risk Manager

Risk Managers identify, assess, and mitigate risks in organizations. The course "Genetic Privacy: should we be concerned?" provides them with an understanding of the ethical and legal risks associated with the collection, storage, and use of genetic data. By gaining insights into genetic privacy concerns, they can develop and implement risk management strategies to protect organizations and individuals from potential harms related to the misuse or disclosure of genetic information.

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Healthcare Administrator

Healthcare Administrators oversee the management and operation of healthcare organizations. The course "Genetic Privacy: should we be concerned?" offers them a solid understanding of the ethical and cultural implications of genetic testing and its impact on healthcare delivery. This knowledge empowers them to develop and implement policies and practices that protect patient privacy and promote ethical use of genetic information in healthcare settings.

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Analyst Programmer

"Genetic Privacy: should we be concerned?" highlights ethical and cultural issues surrounding genetic data privacy. The course can provide valuable insights for Analyst Programmers in the healthcare sector who are involved in the collection, analysis, and interpretation of genetic data. Understanding privacy concerns can enable them to develop and implement secure and ethical data practices, ensuring patient trust and ensuring compliance with regulatory frameworks.

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Professor

Professors conduct research and teach in higher education. "Genetic Privacy: should we be concerned?" provides a solid foundation for Professors in fields related to genetics, bioethics, and healthcare. By gaining insights into the ethical and cultural implications of genetic privacy, they can effectively teach and engage students in critical thinking about the responsible use and governance of genetic information in society.

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Archivist

Archivists play a crucial role in preserving and managing historical records. The course "Genetic Privacy: should we be concerned?" explores ethical and cultural perspectives on genetic data, providing Archivists with valuable insights into the preservation and accessibility of sensitive genetic information. Understanding the implications of genetic privacy can enable them to develop ethical policies and practices for the long-term care and accessibility of genetic data.

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