Negen partners with National Institute for Health and Welfare (THL) on study

Monday, March 25, 2019

Does a genuinely personalized and accurate estimate of disease risk lead to better health decisions? Do individuals find it useful to know their genetic risk? The study, launched last year, seeks to answer these questions.

The National Institute for Health and Welfare (THL) launched a new research initiative in 2018 and has now chosen Negen as the provider for their reporting platform. The aim of the study is to significantly clarify the utility of individual genome information in health decisions. The project is built on the foundation laid by the broad FinTerveys study launched in 2017.

The risk for many illnesses is determined in part by genetic factors. This is especially true for coronary artery disease, type 2 diabetes, and deep vein thrombosis, which are all part of the Finnish national disease burden. One’s genome cannot be changed, but lifestyle factors also contribute significantly to disease risk. How, then, to create motivation for lifestyle changes where disease risk is elevated?

Focus on usefulness of genome information

In this study, individual disease risk will be assessed by means of a lifestyle survey and genetic and metabolic factors. This assessment will then be shared with participants. The idea is that an individualised risk assessment, enhanced by genome analysis, can empower individuals to make healthier lifestyle choices. The perceived utility of a risk assessment encompassing genetic risk has not previously been studied on this scale.

Results will be delivered to participants via a reporting platform created by Negen. Participant feedback on their risk estimate and the way it is delivered is integral to the study: Do participants find this information useful? If not, assessing genetic risk factors is unlikely to bring about better health choices. And do we currently know how to deliver this information in a way that is understandable and meaningful to the recipient? Even the most accurate risk assessment will not do much good if the recipient cannot understand its contents. These are the questions at the core of this study. Participant experiences will be followed up annually for five years after launch.

Towards better population health

When all is said and done, this research project is work towards improving national health at its purest. Its results will point the way towards a future where individual health risks are better known, and individuals themselves are more empowered to participate in their own ongoing healthcare. Genomic information may play a greater role in this than it does now.

The name for this initiative comes from the increasingly popular 4P healthcare paradigm: Predictive, Preventive, Personalised, Participatory. The fifth P is for Population Health — personalized risk assessments, and the individual’s own efforts to maintain good health, will hopefully translate to more years of healthy living at the population level.

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