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Influencing debate in genetics research

Defining a new bioethics that promises real world solutions to real world problems.

Scientists in lab

There have been fast advances in biotechnology since the first human genome sequences in 2003 and 2007. These advances have raised ethical concerns about the consequences of collecting DNA for research - particularly when there are conflicts between the needs of the person or individual and large-groups or organisations.

The challenge to provide pragmatic, moral guidance for all that are affected by geonomics was first raised in Nature Genetics in 2001 and was one of the main themes of our research and debate.

The contributions by Professor Ruth Chadwick have been influential in promoting the principle of solidarity in bioethics and in developing it as an underpinning framework for policy. Especially useful was her research into the way concepts of solidarity have changed in the context of modern genetics, and her interest in openness and honesty with those donating to biobanks.

Hugh Whittall Director of the Nuffield Council of Bioethics

Changes to consent

Research led by Professor Ruth Chadwick has contributed to, and led, philosophical debates around the ethics of how biobanks - the major repositories of DNA - are created and used; therefore defining a new bioethics promising real world solutions to real world problems.

The debate addresses important issues regarding the practicality and acceptability of the undertakings made in current consent protocols about confidentiality and the future use of data.

Professor Chadwick's contributions to discussions and documents resulted in changes to how consent is gained from DNA donors.

What is DNA?

Deoxyribonucleic acid is a self-replicating material which is present in nearly all living organisms as the main constituent of chromosomes. It is the carrier of genetic information.

Wide-ranging impact

The impact of this research is most visible in the Personal Genome Project, and the work of the Nuffield Council on Bioethics, the UN Food and Agriculture Organisation, the Human Genome Project and H3Africa.

It has resulted in changes to the policies and practices of organisations with national and international responsibilities, in increased levels of social awareness of these complex issues, and in recent developments in public policy. It embodies a novel and pragmatic understanding of the relation between ethics, medical research and commercialisation.

The main beneficiaries of this research are national and international bodies engaged with the collection, storage and research of genetic biodata, individuals donating their genetic material, their families and wider national and international communities benefiting from research made possible by biobanks.

To talk to us about this research, please contact communications@cardiff.ac.uk


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