Genomics and Genome Editing

This research programme will investigate the ethical issues arising in the research and clinical uses of genomics and genome editing. Important connections will be made between this and the other themes on data, global health, and neuroscience. Ethical issues in the conduct of genetic research include: the role of commercialisation; the appropriate relationship between research and clinical practice; feedback of findings; suitable approaches to consent; and, resource allocation. Other controversial ethical issues in genomics include: genome editing; genomics in low-income settings; psychiatric genomics; the uses of genomic testing and screening prenatally and in infancy, and questions relating to the ownership of pathogens.

Many new and potential uses of genomics and genetics raise important ethical questions about the relationships between ‘treatments’, ‘modifications’, ‘enhancements’ and the ‘natural’. These include: mitochondrial donation; genome editing; non-invasive (genomic) prenatal testing; blastocyst complementation to create human nonhuman chimeras a source of organs; genome editing of human embryos; genetic selection; pluripotent stem cell derived gametes. The modification of genomes through genome editing and germline interventions raises important questions about what it is to be human, about authenticity, and identity.

It is likely that genomic information will come to be seen as a lifelong, refreshable resource for individual care, public health, and the development of health services. There will be a growing awareness of the benefits of integrating analysis at population and individual levels. How should such information be used? How should responsibilities for the management and use of such resources be understood? The field of genetics has dealt with these questions in relation to the care of patients and families with rare inherited disorders for over a decade but a new "information-based" ethics is needed which utilises the massive computational and algorithmic power of computing and the internet to enable and empower the making of choices both about the health and well-being of individuals, their children, and populations. The increasing usefulness of genomics in health care also raises important questions about equity of access to treatments and services.

Photo credit

SNRE lab: Molecular DNA. University of Michigan School for Environment and Sustainability. Credit: Flickr. CC BY 2.0.