Skip to 0 minutes and 10 secondsHi, my name is Kieran O'Malley and here in week four, we're going to be looking at the ethical considerations we have to make when working with genomic data. If you ask people what is ethics, you are likely to get a number of different replies. Most will agree that ethics has to do with the question of how we should behave and what choices we should make about how we live our lives. Many people tend to equate ethics with their feelings about whether something is right or wrong. Ethics is about more than whether an individual can find the answers to the question, how should we behave?

Skip to 0 minutes and 40 secondsThis may differ greatly and typically includes references to religion, to intuitive feelings, to professional codes of practice, to laws and policies, and to cultural norms. This is no different when it comes to genomic testing. There have been some remarkable advancements in genomics research in recent years. The use of genomic testing has gone from rare to routine in many clinical settings. Yet, while there are clear clinical benefits to the patient, this also introduces new risks to patient privacy and patients are potentially vulnerable to the misuse of their genetic information. Genetic information is often considered exceptional when compared to other medical information about an individual.

Skip to 1 minute and 19 secondsHowever, the shared nature and ownership of genetic information means that a diagnosis or finding an inherited predisposition in a family member has implications for other family members, as well. We must be aware of the right to privacy of those involved. This means safeguarding participant anonymity and ensuring that any data provided is treated confidentially. Throughout this week, we will be considering some of the ethical dilemmas involved with working with genomic data, including what kind of data is being collected, where this genetic data is stored, and we'll also be considering who actually owns this information and who should decide who can access it.

Welcome to Week 4

Welcome to this week on ethics and genomic medicine. In this video Kieran O’Malley will introduce to the topic and will highlight the great responsibility we have when dealing with genomic data. We allude to the coverage in the media on this key issue, please refer to the references below to access these.

This week’s learning objectives:

1 Explain some of the common ethical dilemmas involved with working with Genomic Data

2 Describe the kind of data is being collected

3 Explain where the genetic data is stored

4 Elaborate on ownership and who actually ‘owns’ this information


References

Media screenshots included in the video:

  1. Taken from the article Genome Editing poses ethical problems that we cannot ignore in The Conversation written by Anthony Wrigley from Keele University & Ainsley Newson from University of Sydney. Published on March 31st 2015.

  2. Taken from the article human genome sequencing: the real ethical dilemma in The Guardian written by Mark Henderson published on Monday 9th September 2013.

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This video is from the free online course:

Clinical Bioinformatics: Unlocking Genomics in Healthcare

The University of Manchester