There is a prediction that by the year 2030 every newborn of the modern world will be scanned and by this the possibility to forecast their diseases would expand drastically. One of the main question after acknowledging this fact is whether we are ready to know the future, which might be not pleasant at all? Those concerns were discussed during the panel discussion of The COINS 2019 – “Personalised medicine: an unattainable goal or reality of tomorrow?”
The participants of the discussion were Jevgenija Vienažindytė, who is a Senior Associate at Ellex Valiunas law firm; Eimantas Peičius – Associate Professor at the Department of Bioethics; Agnė Vaitkevičienė, who is a member of Lithuanian Biotechnology Association and Rasa Sabaliauskaitė – Head of Genetic diagnostic laboratory at National Cancer Institute.
Not as new as we might think
Every time when we feel sick and come to some healthcare institution, we get tested and, according to the results, some treatment is prescribed to us. However, neither us nor the doctors are one hundred percent sure if the cure will work on us efficiently as our bodies are unique and react to medicine differently. This is where the idea of personalised medicine comes in – is it possible to cure everybody according to their unique genome sequences?
One of the speakers Vienažindytė noticed that the idea of individualized medicine is not as new as we might think – all the times when we come to some healthcare institutions, we would like to be treated individually, not generally. “Personalised medicine was used years ago, but then we were blinded by industrial manufacturing and now we are going backwards. The question is whether we are ready in the field and in the context of current development of life sciences to change our ways.” – she said.
Today, personalized medicine is mostly adapted to cancer treatment, more rarely – to autoimmune diseases, diabetes, multiple sclerosis, neurodegenerative diseases. Scientists are also paying more attention to diseases that are not known today – in order to prevent them.
Theoretically possible, but extremely expensive
Vaitkevičienė stressed that by today’s standards, from the industry’s point of view, personal medicine is extremely difficult to achieve as precise medicine is expensive, so it is very difficult for government to finance it and the patients don’t have the money to pay for it as well – for example, a single treatment might cost at least 200 000 euros. Even though modern countries are talking about sequencing the genomes of their citizens (for example, Estonia has already done that to 120 000 people and it is projected that after 10 years every newborn of the modern world will have their genome sequenced), all the countries will have to find the solution to how these new innovations can be introduced to healthcare to become not only a theoretical, but also a practical advancement.
Vaitkevičienė thinks that it is more efficient to treat someone only once instead of taking care of them their whole life. “GlaxoSmithKline announced that they have applied one drug to newborns who have a very specific disorder – the treatment cured it, although the babies were ought to die in their first or second year. If the disease that a person has is long-term, the government would have to pay for their hospitalisation, drugs and that most probably would cost more than the expensive drug, taken once” – she explained.
The ethical question is not solved
Undoubtedly, personalized medicine is always linked to personal data. Precision medicine is worthless without big data but even if we have it, we still are not sure how to use it. Vienažindytė is sure that even in the most casual situations, we underestimate the value of data.
She gave an example of the project “Stanger visions” by the artist Heather Dewey-Hagborg. The author collected different items from the streets – pieces of chewed up gum, cigarette butts and other things that could be identified as an abandoned DNA source. Afterwards, she used them to recreate genome sequences and, using a 3D printer, made sculptures that would potentially represent the faces of the people that were using those items.
As we obtain all the possible information about one’s health, that inevitably affects not only our future plans or lifestyle, but also our attitude about others. For example, would you even bother to date someone if you knew about their genetic disease? All the participants of the discussion agreed that even if the possibility to get an analysis of one’s disorders or future diseases was available, the public should be widely educated about this and not only learn how to interact with those who might potentially be sick, but also be able to have their own will on the matter.