The Potential (Burden) of Knowledge

Will the future of personalised healthcare depend on genome sequencing? Probably, but there are strings attached.

Earlier this month, Norway announced that they are preparing to be one of the first countries to incorporate genome sequencing into its national healthcare system. 25,000 Norwegians are diagnosed with cancer each year, so the cancer genomics pilot phase is looking to provide physicians with a better understanding of each mutation process in order to treat the patients more efficiently and accurately. The UK, France, Faroe Islands and the United States are also exploring the  application  of DNA screenings as a tool in future healthcare. With prices in the near future as low as $100 for a screening (taking only 8 hours), it will become both cheaper and more precise than some of the current prognosis methods. But while treatments and medication may become more bespoke and personalised through such data knowledge, genome sequencing might also create a nation of hypochondriacs, making the biggest threat to your health your own paranoia.

In a time where the tendency is to be more and more in control of (or at least have easier  access  to) our own medical records, maybe we want to ask ourselves how much we actually want to know about our health. Just as some mentally ill people doesn’t always benefit from reading their own health records, it might be that some people won’t benefit from knowing their risks through DNA sequencing. In the same way that data might provide people with valuable insight into their own health, genome sequencing is also a bit like a scientific fortune teller, where holding knowledge of data relating to your health risks can affect your behaviour in a negative way. There is no ‘one-size-fits-all’ model in this.

23andme.com is an American personal retail genome service providing information  and tools for consumers to learn about and explore their DNA. Photo from  23andme

In the Faroe Islands, DNA sequencing is under way with their recently launchedFarGen project. Where services such as the private American 23andme facility provide personal retail genome services for anybody to explore (participants are sole holders of the data afterwards), FarGen is as much about the ethical and social challenges as it is about the technical and medical  opportunities . In the first instance, the participants of FarGen will not receive the results, and even doctors will have to send a query to the Ministry of Health for information relating to the patient’s genome sequence. In many ways, these two examples underline the very discourses of such sensible data. Is your genome public or private, anonymous or identified? Can we handle the data or should somebody else take care of it?

To begin with, for genome sequencing to be successful in future healthcare services, people need to better understand the data they have access to. First we need better general health literacy, but we also need to be able to understand our risks and how to interpret our genetics and genomics. FarGen will introduce genome education in school and 23andme offers a collection of education materials to guide the users. Nonetheless, in some cases, maybe we should let doctors be doctors and patients be patients and think twice about the benefits of DNA insight access if the risk of strong mental burden poses a bigger threat than the benefit of knowledge. What do you think?