Encouraging proper data sharing in genomic medicine is a top priority for the National Data Guardian in 2018.
The National Data Guardian for Health and Care 2017 report: Impact and influence for patients and service users looks back at Dame Fiona Caldicott’s three years as the first National Data Guardian and sets eight priorities for the future. With the NDG role expected to be placed on a statutory footing during this Parliament, the report reinforces the importance of the NDG role as being independent and able to challenge the health and care system about the use of data on behalf of the public.
PHG Foundation’s regulation and ethics lead, Alison Hall and science lead, Sobia Raza have been working with the NDG office throughout 2016-17 to build consensus for a proportionate and responsible approach to sharing genomic data. This work included an evidence session held in October 2016 by the NDG office, with collaboration from the PHG Foundation and the Association for Clinical Genomic Science (ACGS), which informed Dame Fiona’s paper on building consensus on genomic data sharing. Highlighted in the paper was the need to explore appropriate consent for routine NHS clinical genetics and genomics services and a Privacy Impact Assessment (PIA) process to examine the suitable arrangements for genomic data sharing within the NHS.
Point 3 in the list of eight priorities for the year ahead are to ‘work alongside others to encourage proper sharing of data in genomic medicine and to contribute to the thinking about how patients should be engaged about this’.
PHG Foundation believes sharing genetic and genomic data and associated clinical and phenotypic data is vital to good clinical care and routine NHS genomics service delivery. Our work on genomic data sharing for patient benefit can be viewed here.