What's standing in the way?
Unfortunately, there’s an unwillingness to use tools like Polygenic Risk Scores because medical professionals are unsure how patients will react to being told about their risk for certain conditions. They don’t know whether it will change their lifestyle or if it will have a negative impact on their mental wellbeing. However, Eric said there has been a Finnish study where a large group of people were told they were a higher risk for certain conditions and overall they made positive lifestyle changes, like stopping smoking or losing weight in order to reduce their risk. That’s why Eric believes we should be making the most out of this research and giving people the opportunity to do something about their health.
Not long ago, medical professionals thought the same thing about at-home pregnancy tests; they didn't believe women could handle being told they were pregnant without a doctor present - this is of course, in most cases, untrue. Information is a lot like medication in that way, on some people it will work really well and some it won't but if the net outcome is positive, then it’s something we should be putting out there.
Another huge thing which Eric feels needs to change is that currently, people don’t own their own data. If everyone had their own data, and no one is more entitled to own their data than themselves, then they could share whatever parts of it they needed to with those they trust. Obviously it’s vital that data is shared to provide high-quality care but we should be letting each individual make that call.
Eric believes that we’ve been suppressed by medical professionals under a ‘doctor knows best’ mentality but we’re all just people in the end and he says that there’s no special reason why doctors should own your data. He goes on to say ‘It may be their note but guess what? It’s my body.” It's really time we changed attitudes around this to move forward.