Consent and Clinical Trials in Pharmacogenetics - Facilitating the clinical implementation of modern genetic technologies for the treatment of inflammatory bowel disease patients

Ethical models of consent for participation in biomedical research are not sufficiently explored in the pharmacogenetics context. However, this is an interesting area as feeding back individual findings to research participants, who are also often patients, may raise particular issues for participants concerning ongoing and future treatment decisions. Pharmacogenetic research, much of which is currently funded by industry groups and charities, has the aim of identifying genomic links to pharmacologic treatment outcomes, including the likelihood of adverse effects of common forms of treatment of diseases such as IBD. Individual findings arising from participation may therefore have treatment implications for participants, raising somewhat different questions from those currently arising in much biobank research which has tended to focus on disease susceptibility.

Prof Kelly and Dr Carrieri are collaborating  with Dr Tariq Ahmad – Inflammatory Bowel Disease (IBD) Pharmacogenetics Group, Royal Devon and Exeter NHS Foundation Trust  to investigate perspectives concerning consent to participate in pharmacogenetic research, extending the impact of the research that examines ethical issues and expectations of patients and healthcare professionals towards re-contacting patients in light of new genetic findings.

This collaboration and research project is funded by the ESRC Impact Accelerator Account.

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