New guidance urged on duties of care resulting from genome sequencing
17 August 2017
A paper published this week calls for serious consideration of the legal issues surrounding novel duties of care that may arise as genome sequencing becomes mainstreamed into clinical practice. The paper makes the case for three key challenges to be addressed in UK law and for these to be reflected in updated guidance for healthcare professionals and researchers.
Clinical genetics deals with the diagnosis, management and counselling of patients with genetic disorders. An accurate genetic diagnosis for a patient can mean earlier medical interventions, can help to identify other family members at risk of disease development and provide information on which to base reproductive choices.
Genome-wide sequencing technologies, like that used in Genomics England’s 100,000 Genomes Project, have been shown to improve the percentage of patients who receive a molecular diagnosis for their disease by 20-30% over existing methods but it also brings challenges.
Exploring the potential duty of care in clinical genomics under UK law looks at how UK law could establish new legal duties in relation to feedback of findings that are unrelated to the presenting condition in the patient (secondary findings); duties towards genetic relatives as well as the patient and duties on the part of researchers and professionals who do not have direct contact with patients.
This work was led by Colin Mitchell and PHG Foundation's head of humanities, Alison Hall, is among the authors of the article which was written following a workshop funded by the Wellcome Trust on the Duty of Care in Clinical Next-Generation Sequencing and resulting collaborations.