Medical ethics research inspires opera on the international stage

An international, multidisciplinary research project titled Mind the Risk (2014-2019) focused on how new technology is raising questions about how genetic risk data should be processed and managed by healthcare professionals as well as patients.

The research project was led by Mats G. Hansson, professor at the Department of Public Health and Caring Sciences, and active within the Centre for Research Ethics and Bioethics at Uppsala University.

“A society entirely free of risk is neither possible nor desirable. You can’t hang pharmaceutical companies out to dry. We need the drugs they manufacture. The regulatory authorities must balance benefit against risk, and sometimes it takes time for side effects to become apparent in the general population, even if nothing serious was seen in the limited study population,” he says.

New technologies create complex challenges

A particular challenge for risk management is genetics; a growing field, where it is possible to predict future disease with varying degrees of probability.

“The practice of medicine always involves risk, as no treatment has benefits alone. Interpreting information about risks is difficult enough in clinical contexts and it becomes even more complex with modern genetic technologies that generate large data sets,” says Professor Hansson.

With the help of genetics, you can tailor treatments to the individual: what is termed precision medicine. This can enable adapted care and better prevention, but it also raises concerns about stigmatisation, information that is difficult to interpret, unrealistic expectations, and increased anxiety among patients, according to Mats G. Hansson.

“Genetics can calculate risk, but how big the risk is in reality depends on many factors. Where do you draw the boundaries on what are acceptable and manageable uncertainties? Who should determine these boundaries? How should we communicate risks? What is it like to live with an identified risk?”, he asks.

Public health and galloping epidemics

When long-term lifestyle and behavioural changes with psychological support are weighed against a more short-term intervention such as a drug for back pain, obesity, anxiety, disruptive or hyperactive behaviours, it often poses major challenges,” says Mats G. Hansson.

“These are not easy choices, but one has to do something about public health problems. We even have our own public health agency. This is politically important. In the American opioid scandal, the epidemic was able to bolt once there was an approved drug and when different pharmaceutical companies jumped on board the trend as well,” he says.

The American opioid scandal originated in the 1995 decision by the USA’s Food and Drug Administration (FDA) to approve the wider use of the drug OxyContin – for chronic pain. This was followed by an aggressive marketing campaign from the manufacturer, Purdue Pharma, targeting both the general public and the general practitioner profession.
Emotionally charged messaging was used to convince people of OxyContin’s excellent qualities. The benefits were highlighted and the risks of side effects were toned down. The drug was also not expensive to buy,” he explains.

The pharmaceutical industry’s problematic behaviour

The extensive addiction problem caused by prescribing the drug may have resulted in more than 600,000 deaths from overdoses from the mid-1990s according to current estimates by the National Institute on Drug Abuse (NIDA). Many of those who started taking OxyContin eventually became addicted to heroin and Fentanyl.

“Purdue Pharma even increased its focus on the drug to be able to cater to the widespread opioid addiction that ensued – an effect of OxyContin – while the company was earning billions from OxyContin, which had created the opioid addiction itself,” he says.

Mats G. Hansson draws parallels with today’s aggressive marketing of the drugs Ozempic and Wegovy to help people lose weight. The companies that make and market these drugs are still choosing to emphasise the small risks and the big health benefits.

“That has clear echoes of the opioid scandal. How much responsibility does the patient have? How much responsibility do the influencers have who market Ozempic as a great way to lose weight?,” he asks.

The Galloping Cure – research leads the way to the world’s opera stages

The RJ-funded Mind the Risk project not only resulted in extensive publication in scientific journals, but also had a wider societal impact. Among other things, it has inspired an opera about the risks of medical treatment. It’s been an incredibly exciting journey, according to Mats G. Hansson.

“RJ had issued a call about culture and research coming together. Many people jumped at the chance: theatres, film producers and even Norrlandsoperan. Through RJ, they discovered our research project Mind the Risk and a project by ethnologist Susanne Lundin in Lund that also focuses on medicines.

Royce Vavrek, author of the opera’s libretto, involved them in discussions from the very beginning. Mats G. Hansson explains that the discussions were a lot about whether there was a general problem regarding medicines, treatment and risk assessment.

“We haven’t contributed any words per se in the libretto, but we have been involved by giving our views and providing comments along the way. We also got to provide input when they started rehearsing the opera in Glasgow with the Scottish Opera, “ says Professor Hansson.

The opera will be produced in Umeå, Edinburgh, and San Francisco, and in Australia and New Zealand.

“It’s fantastic that the opera is an international project, which means our research is shared. It’s exciting that it will get exposure to the public as a result of this kind of production. In that sense, I think it’s quite unique. We wanted to show how these questions that are raised by the opera have additional connotations, that they don’t need to be linked specifically to the American opioid scandal,” he concludes.