“Cancer is still a word that strikes fear into people’s hearts… today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”
So wrote Hollywood star Angelina Jolie in a New York Times editorial, explaining her decision to have both of her breasts removed because she carried the BRCA gene that increases the chances of developing breast cancer.
Which socioeconomic factors affect genetic testing uptake?
Her honesty was widely applauded and reignited the debate around predictive genetic tests. Jolie urged every woman to seek out information from medical experts to help make their own informed choices. The question is – do they? Antony Martin at the University of Liverpool has been examining whether socioeconomic factors affects whether people get tested for their BRCA status, and more widely if the era of personalised medicine is bridging or expanding health inequalities.
In collaboration with Liverpool Women’s hospital’s Merseyside and Cheshire Genetics Service, Antony has found that BRCA gene testing increased following the publication of Jolie's editorial, as well as the UK’s NICE guidelines (CG164) also published in 2013, but uptake of testing was lower in poorer, more deprived areas. This research, which is in preparation for publication and as part of Antony’s PhD, can thus help to target interventions to improve access in vulnerable populations.
Jolie’s article was credited with raising awareness of the issues, and finished her article with a notable point: “It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live.”
Equity and personalised medicine studies
Coming from a health economics and outcomes research background, Antony’s PhD research has revealed just how little data exists or is collected to inform questions to inform equity to access. In a systematic review of published observational studies to evaluate access to trastuzumab (Herceptin) therapy for breast cancer, Antony found that uptake varied widely between studies and across subgroups, suggesting lower uptake in certain minority groups.
“There is a big issue with a lack of studies conducted across different ethnic and racial populations,” Antony explains. “Countries in Europe and the USA continue to drive personalised medicine forward. However, minority groups are historically deprived and may experience lower access to innovative therapies as clinical studies often do not recruit sufficient numbers from diverse populations, so we just don’t know how new therapies will work in clinical practice for all patients.”
He advocates that equity implications should be considered in personalised medicine studies, and an equity impact assessment should be included in all clinical studies to assess how medical advancements will impact diverse populations.
I believe people have a fundamental right to equal access to health care for equal health need.
Anthony Martin, Research Fellow in Health Economics
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