Exploring the ethics of genetic testing

Genetic testing comes with complex ethical dilemmas, especially for those living with rare diseases.

Genetic testing can have far-reaching effects on rare disease patients and their family, especially when facing hereditary conditions. It comes as no surprise that genetic testing can cause stress, fear and misconceptions.

This guide outlines both the for and against arguments of genetic testing to help patient group leaders better understand the ethical complexities that come with genetic testing. Their community will be either for or against genetic testing so understanding their unique point of view is crucial to providing correct, respectful support.

The aim of this guide is to empower patient group leaders to help their community make informed decisions, understand their rights, and consider the broader implications of genetic testing on their health, privacy, and family.

Please note: This guide is one of three courses!

Keep an eye out for:

Exploring the ethics of prenatal testing
Exploring the ethics of gene therapy

Coming soon!

With thanks to:

Georgia Kennedy, who volunteered with Beacon during Summer 2024 while studying biomedical science at Royal Holloway University!

Georgia researched and wrote this guide for our rare disease charity on a voluntary basis.

My name is Georgia, and I volunteered with Beacon during my summer placement and really enjoyed it! I’m currently studying biomedical science at Royal Holloway University and hoping to move into a career in medical research or pharmaceuticals in the future!

Working with Beacon has really helped me rediscover my passion for helping others through research and I will continue to work towards this goal in my final year of university.

Genetics is a topic I find incredibly interesting and complex. I have loved having the opportunity to research it further and I am so happy to have this guide published as my first step towards helping others and making positive change.

With thanks to the Funders of The Empowerment Programme 2024

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Resource type

Course



Skill level

Beginner



Duration

1 hour



Last updated

November 2024



Resource type

Course



Skill level

Beginner



Duration

1 hour



Last updated

November 2024

What will you learn in this course?

Types of genetic testing

How genetic tests are conducted

How genetic tests are stored

What genetic testing results can mean

The ethical arguments for genetic testing

The ethical arguments against genetic testing

Who is this course for?

This course is designed for all patient organisations, patients and rare stakeholders who want to gain a basic understanding of the ethical considerations that come with genetic testing.