Views on genetic data & ethics

Views on...genetic data & ethics

Professor Anneke Lucassen, Chair of the UK Biobank Ethics Advisory Committee, discusses some of the ethical issues raised by the use of genetic data in research.

What are the big ethical questions raised by genomic research?

There are many different ethical issues raised by genomic research. For example, genomic data can reveal sensitive information about a person and their family’s ancestry and health. It is therefore important that we store and provide approved researchers with access to genomic data securely and responsibly.

Another ethical issue relates to equity and fairness - we need to make sure genetic research involves diverse populations so that everyone benefits from the findings, and that we avoid reinforcing existing health disparities.

How has UK Biobank considered the ethics of genomic research?

The UK Biobank Ethics and Governance Framework sets out our commitment to respecting our participants’ wishes as well as their confidentiality. The Ethics Advisory Committee works to ensure that this framework remains at the forefront whilst considering the ethical issues arising today. For example, although UK Biobank’s genetic database is currently the largest in the world, including data from people of different ethnicities, we need to continue to involve a diversity of participants in the coming years.

Can UK Biobank participants be identified from their genetic data?

UK Biobank goes to great lengths to protect the information it holds about its participants. Researchers are prohibited from identifying participants using the genetic (or any other) data they access from UK Biobank. This would contravene the legal agreement that researchers sign when they are approved to use UK Biobank data.

However, participants should be aware that if they put information that reveals something about their health and identity on social media or other public websites, this can make it easier for them to be identified. We will be providing more information to raise awareness about this in 2024.

Sometimes the police look to use DNA databases to identify suspects, but law enforcement agencies (domestic or international) are not allowed to access UK Biobank data for this purpose. 

The UK Biobank Ethics Advisory Committee is keen to hear what participants think it should be discussing next. Please contact communications@ukbiobank.ac.uk with your suggestions.