Using genomics to challenge disparities in 21st century healthcare
By Integrated Care Journal-
Professor Julian Barwell, clinical lead on a pilot NHS England tumour sequencing transformation project, ‘United Against prostate cancer’ and professor in genomic medicine, discusses some of the challenges in addressing cultural barriers to change within the NHS as well as inequity of access to research; both of which can hinder improvements in healthcare outcomes for certain patient groups.
The drive to personalise treatments and think beyond the (light micro) scope of 17th to 20th century healthcare is starting to have an impact beyond rare mendelian diseases. Be it tracking microbial diseases, cancer treatments or predicting the metabolism of certain drugs, the ability to use computer modelling and bioinformatics is beginning to be mainstreamed into other specialities beyond clinical genetics.
This democratisation of genetic testing makes logical sense as we aim to screen people based on risk and treat people more aggressively in a targeted, more appropriate fashion, towards the end of life. However, this type of seismic change comes at a cost and has risks associated with it.
There are dangers that some will get left behind by some of these technological advances: culture can often trump strategy. Some clinicians may be concerned about the drive towards data entry and modelling potential management strategies, rather than being consulted for an opinion. Others may be nervous about the educational requirements in an increasingly complex informatic and genomic landscape. What is more, many may struggle to see the benefit of these innovations over standard care and are concerned about how patients may react if the computer removes access to screening appears to de-humanise treatment.
This inevitably will lead to even greater inequities of access both by region but also potentially between colleagues. Of course, all change takes time and some of these disparities can be lessened with standardisation of consent, pathways, result interpretation and national audits.
Unfortunately, genetics has had a chequered reputation throughout history in carrying out ethical research and ensuring improved healthcare outcomes due to technological advances are equally available to all in society. Consumerism in healthcare will be rapidly introduced in the next ten years through major technological advances in the commercial sector. It is possible that the NHS has not fully understood the potential impact of these, not just in the identification and management of rare diseases, but also in chronic diseases.
Many medical and social injustices have been highlighted and magnified in the current pandemic. However, it is worth reminding ourselves that disparities can present in many arenas. Research into tumours affecting men have often struggled to access funding; those that affect elderly and ethnic minorities, even more so. For example, we know that African men are at higher risk of developing prostate cancer and have a poor prognosis – and yet this is still an under-researched group. Genomic medicine and modelling will only be applicable if the patient is from the population and context that the original data was extracted from. The results from other populations may not necessarily provide useful insights into screening or treatment programmes for these men.
With this in mind, the medical and scientific community needs to develop more opportunities for men of African descent with prostate cancer to access research. This is one of the fundamental aims of the ‘United Against Prostate Cancer’ interest group.
If we turn the computer on and the brain off, we may find we are left with a back-lash to depersonalised healthcare and results that don't yet stand up to the intricacies of the human condition and society.
This 'sense checking' and critical analysis of modelling integrated with a sense of social justice will be key to the role of 21st century doctors.
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