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Credit: Fernando Zhiminaicela on Pixabay
Genomic and genetic medicine increasingly present complex ethical issues to all areas of service provision. Clinical laboratory scientists are frequently required to navigate ethical problems in their work, but how they should be best supported to do this is under explored.
New research by Kate Sahan and colleagues investigates what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness.
The project explored the experiences of clinical scientists presenting cases to the UK Genethics Forum, and revealed three main pressing concerns.
First, that clinical scientists feel partly responsible for how patients will receive results and how they should be followed up in future.
Second, that testing using increased panel sizes may cause scientists to feel obliged to turn data into clinically significant findings prematurely, in order to ‘give an answer’ to patients.
Third, that being consistent in the approach to similar clinical presentations is important to treat patients equitably, but is not a complete solution to managing the range of ethical issues being experienced.
The authors identify a number of ways for how ethical preparedness (EP) might support professionals in managing their practice in this environment. The argue that an EP approach can be combined with existing ethics tools (including guidance and professional standards) to maintain quality ethical thinking, and is also consistent with more formal opportunities for ethics deliberation such as the UK Genethics Forum.
The authors conclude that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness are key to help clinical scientists foster quality ethical thinking, and they recommend a more wide-reaching, fundamental intervention of EP as providing valuable support for this.
Sahan K, Lyle K, Carley H, et al ; Ethical preparedness in genomic medicine: how NHS clinical scientists navigate ethical issues ; Journal of Medical Ethics ; Published Online First: 06 February 2024. doi: 10.1136/jme-2023-109692
The authors pay tribute to Nina Hallowell, colleague and co-author, who sadly passed away during the production of this manuscript.