This OECD Forum 2019 background note will be used to prepare speakers on the panel Pushing the Frontiers of Medicine, taking place at the OECD headquarters from 12:00-13:30 on Monday, 20 May. Join the Forum Network to comment and help inform the upcoming debate and, whether you're with us in Paris or watching online, let us know what you think of the session!

New technologies give many hope for the prevention and better treatment of diseases that may currently be difficult to diagnose and treat. There are great expectations for how the combination of improved data collection through wearables, mobile apps, AI and big data and new diagnostics and treatments including precision medicine could lead to better treatments and higher quality of life. 

The ability to analyse a human genome – a person's entire genetic code – has increased in speed, and significantly decreased in cost over the last 20 years. This has led to much optimism about the ability to personalise approaches to healthcare based on the particular characteristics of a genome. 

The new science of genomics is opening up better diagnoses for patients, better and safer treatments, opportunities for screening and possibilities for prevention. These will all improve as we learn more about genomes and their relation to illness and treatment response. 

Genomic medicine will bring particular improvements to the care of patients with cancer or rare diseases. This means giving the most effective drugs to treat cancer, drugs that will cause fewer side effects, finding new drugs and treatments and moving to personalised prevention. 

Doctors could at very early stages also advise people on lifestyle changes when treatments might not be necessary, or even consider preventive measures when there is a high likelihood of developing disease. But the new so called “P4 medicine” – predictive, preventive, precise and participatory – will also require new standards and policies for handling biological and healthcare information about individuals. 

Genomes may contain information that people wish to keep confidential, and predictions of future health status raise complex questions about how much people want to know or want others to know. Complex data sets need to be handled securely and interpreted knowledgeably and thoroughly. 

Key to advancing genomic medicine will be helping patients to understand that by agreeing to use data about their illness, they may bring direct benefits to themselves as well as to others. Using live data to make diagnoses and assessments means that the latest science is brought to bear on their illness, helping them to get the best result as quickly as possible; relying only on data published in traditional journals means using evidence that is at least 12-24 months old. As the field of genomics is advancing so quickly, this time lag can make a big difference. Where patients consent, they may also be able to be contacted if new treatments emerge for their conditions. 

One already established way of using genetic information is by identifying disease at conception. In this reproductive method a known genetic defect is identified, a couple uses in vitro fertilisation to produce embryos and those embryos are screened to identify which have inherited the disease. Only the non-affected embryos will be implanted into the mother. In this way, diseases can slowly be eliminated from society: but decisions like this also have important ethical, human and societal implications. 

• How likely is it that these new personalised treatment options will really help treat rare diseases and cancer better, and in what timeframe?
• Will these options be very expensive for the healthcare systems, and only accessible to those that are well informed and able to finance these treatments, or will they be available for everyone?
• In order for these treatments to develop, are they dependent on the sharing of personal, sensitive health data quite widely? What is being done to ensure these data are well protected?
• To what extent are health systems accountable for helping citizens and patients navigate the pros and cons of these new technologies?
• Decisions about deciding before conception whether an embryo might have a disease are very personal, and touch on our humanity. How are people advised on this, and how are decisions taken?

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Find out more about OECD Forum 2019: World in EMotion

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