Knowing our genome can be frightening, because it contains clues about our future illnesses. Bioethicist Ralf Jox suggests ways of coping with this information and explains the social implications of DNA sequencing.
Knowing your genome is interesting for two main reasons. First, it tells us a great deal about ourselves. We can spot warning signs of a future disease or identify the cause of an existing disease. Our genetic make-up can also reveal information about our personality. Second, our genes also deliver information about our relatives, because we share a significant amount of our DNA with them.
The concerns are primarily due to a lack of knowledge. These days, there are a lot of misconceptions surrounding what our genome can reveal about us. We mustn’t forget that it’s a relatively new subject. The potential of genome sequencing has been part of the conversation since the 1980s. But only since the 2000s has the technology become both more efficient and more widely available, and has the topic been discussed in the public realm.
People should remember that we all carry within us predispositions to dozens of diseases. This leads to many questions such as, what should we do with a high risk of developing a disease that has no cure yet – such as Alzheimer’s – or which cannot even be prevented? That can cause anxiety. We must therefore create a psychological and medical support framework for these situations. A predisposition to a disease does not mean the disease will actually develop. But it is also impossible to prevent a disease from developing or spreading 100%, even if the individual lives a very healthy lifestyle. The key is not to fall into the trap of constant panic.
First of all, it is important to know that this private company does not sequence the whole genome, but a targeted analysis of a few parts of DNA. It therefore provides individuals with information about their ethnic origins or predispositions to certain illnesses, such as Parkinson’s disease. It’s mainly that second aspect that I’m sceptical about. At present, there is no cure for this disease. It’s difficult for an individual know what to do if they receive that kind of information from 23andMe. As for the company’s success, I think it reflects the times we live in.
We are part of a complex and pluralistic world. Knowing more about our DNA helps give us meaning and a sense of identity.
Evidence of that is how willing people are to share information about their ethnic origins on social media.
Knowing someone’s genome gives power over them. We know a lot about their current condition and about their future. Naturally, this kind of information could be of interest to parties such as the government, employers and insurance companies, which could then use it to serve their own ends. At the same time, DNA sequencing also offers enormous therapeutic potential. That is why lawmakers need to put in place adequate safeguards to restrict access to this highly sensitive information.
Already today, insurance companies offer bonuses for customers who exercise a lot or wear sensors that count their steps or measure their blood pressure. As soon as there is a technological and legal way of basing premiums on genetic predispositions, they will want to do so. Everything will depend on the legal framework governing such practices. For example, DNA testing could be allowed in cases of family medical history or certain pathological symptoms. However, any part of DNA that provides information about the policyholder’s personality or behaviour should remain off limits.
Our current system is based on the assumption that anyone can get sick at any time. We agree to stand by our fellow citizens because we know that we may also be in need at some point in our lives. But what happens if a majority of the population has its DNA sequenced to better anticipate the development of certain diseases? Will those people blame patients for not having their DNA tested or not doing enough to prevent the disease? That could destabilise our system, which is based on solidarity.
What’s the solution?
Solidarity should be based on the fundamental needs we share, with no relation to the responsibility we take for our actions and behaviour.
Of course, the health system must focus more on prevention – to make it more economically sustainable for one thing. But the personalised medicine of the future must look beyond genes and uphold understanding and compassion for the person who is sick and suffering.
Ralf Jox is a bioethicist, neurologist and palliative care specialist. As Associate Professor at Lausanne University Hospital (CHUV), he is active with the Institute of Humanities in Medicine and the Clinical Ethics Unit, and co-directs the Chair of Geriatric Palliative Care. In May 2019, Dr Jox was appointed to the Swiss National Advisory Committee on Biomedical Ethics by the Swiss Federal Council. His research activities focus on end-of-life ethics, advance care planning, clinical ethics, and neuroethics.