When Kim Kardashian posted on Instagram about having had a full-body MRI, she enthused that the test can be “life saving”, detecting diseases in the earliest stages before symptoms arise.

What Kardashian neglected to say was there’s no evidence this expensive scan can bring benefits for healthy people. She also didn’t mention it can carry harms including unnecessary diagnoses and inappropriate treatments.

With this post in mind, we wanted to explore what influencers are telling us about medical tests.

In a new study published today in JAMA Network Open, we analysed nearly 1,000 Instagram and TikTok posts about five popular medical tests which can all do more harm than good to healthy people, including the full-body MRI scan.

We found the overwhelming majority of these posts were utterly misleading.

5 controversial tests

Before we get into the details of what we found, a bit about the five tests included in our study.

While these tests can be valuable to some, all five carry the risk of overdiagnosis for generally healthy people. Overdiagnosis is the diagnosis of a condition which would have never caused symptoms or problems. Overdiagnosis leads to overtreatment, which can cause unnecessary side effects and stress for the person, and wasted resources for the health system.

As an example, estimates suggest 29,000 cancers a year are overdiagnosed in Australia alone.

Overdiagnosis is a global problem, and it’s driven in part by healthy people having tests like these. Often, they’re promoted under the guise of early screening, as a way to “take control” of your health. But most healthy people simply don’t need them.

These are the five tests we looked at:

The full-body MRI scan claims to test for up to 500 conditions, including cancer. Yet there is no proven benefit of the scan for healthy people, and a real risk of unnecessary treatment from “false alarm” diagnoses.

The “egg timer” test (technically known as the AMH, or anti-mullarian hormone test) is often falsely promoted as a fertility test for healthy women. While it may be beneficial for women within a fertility clinic setting, it cannot reliably predict the chance of a woman conceiving, or menopause starting. However, low results can increase fear and anxiety, and lead to unnecessary and expensive fertility treatments.

Multi-cancer early detection blood tests are being heavily marketed as the “holy grail of cancer detection”, with claims they can screen for more than 50 cancers. In reality, clinical trials are still a long way from finished. There’s no good evidence yet that the benefits will outweigh the harms of unnecessary cancer diagnoses.

The gut microbiome test of your stool promises “wellness” via early detection of many conditions, from flatulence to depression, again without good evidence of benefit. There’s also concern that test results can lead to wasted resources.

Testosterone testing in healthy men is not supported by any high-quality evidence, with concerns direct-to-consumer advertising leads men to get tested and take testosterone replacement therapy unnecessarily. Use of testosterone replacement therapy carries its own risk of potential harms with the long-term safety in relation to heart disease and mortality still largely unknown.

What we found

Together with an international group of health researchers, we analysed 982 posts pertaining to the above tests from across Instagram and TikTok. The posts we looked at came from influencers and account holders with at least 1,000 followers, some with a few million followers. In total, the creators of the posts we included had close to 200 million followers.

Even discounting the bots, that’s a massive amount of influence (and likely doesn’t reflect their actual reach to non-followers too).

The vast majority of posts were misleading, failing to even mention the possibility of harm arising from taking one of these tests. We found:

• 87% of posts mentioned test benefits, while only 15% mentioned potential harms
• only 6% of posts mentioned the risk of overdiagnosis
• only 6% of posts discussed any scientific evidence, while 34% of posts used personal stories to promote the test
• 68% of influencers and account holders had financial interests in promoting the test (for example, a partnership, collaboration, sponsorship or selling for their own profit in some way).

Further analysis revealed medical doctors were slightly more balanced in their posts. They were more likely to mention the harms of the test, and less likely to have a strongly promotional tone.

As all studies do, ours had some limitations. For example, we didn’t analyse comments connected to posts. These may give further insights into the information being provided about these tests, and how social media users perceive them.

Nonetheless, our findings add to the growing body of evidence showing misleading medical information is widespread on social media.

What can we do about it?

Experts have proposed a range of solutions including pre-bunking strategies, which means proactively educating the public about common misinformation techniques.

However, solutions like these often place responsibility on the individual. And with all the information on social media to navigate, that’s a big ask, even for people with adequate health literacy.

What’s urgently needed is stronger regulation to prevent misleading information being created and shared in the first place. This is especially important given social media platforms including Instagram are moving away from fact-checking.

In the meantime, remember that if information about medical tests promoted by influencers sounds too good to be true, it probably is.

Brooke Nickel, NHMRC Emerging Leader Research Fellow, University of Sydney; Joshua Zadro, NHMRC Emerging Leader Research Fellow, Sydney Musculoskeletal Health, University of Sydney, and Ray Moynihan, Assistant Professor, Faculty of Health Sciences & Medicine, Bond University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Before the COVID pandemic, the World Health Organization (WHO) had made a list of priority infectious diseases. These were felt to pose a threat to international public health, but where research was still needed to improve their surveillance and diagnosis. In 2018, “disease X” was included, which signified that a pathogen previously not on our radar could cause a pandemic.

While it’s one thing to acknowledge the limits to our knowledge of the microbial soup we live in, more recent attention has focused on how we might systematically approach future pandemic risks.

Former US Secretary of Defense Donald Rumsfeld famously talked about “known knowns” (things we know we know), “known unknowns” (things we know we don’t know), and “unknown unknowns” (the things we don’t know we don’t know).

Although this may have been controversial in its original context of weapons of mass destruction, it provides a way to think about how we might approach future pandemic threats.

Influenza: a ‘known known’

Influenza is largely a known entity; we essentially have a minor pandemic every winter with small changes in the virus each year. But more major changes can also occur, resulting in spread through populations with little pre-existing immunity. We saw this most recently in 2009 with the swine flu pandemic.

However, there’s a lot we don’t understand about what drives influenza mutations, how these interact with population-level immunity, and how best to make predictions about transmission, severity and impact each year.

The current H5N1 subtype of avian influenza (“bird flu”) has spread widely around the world. It has led to the deaths of many millions of birds and spread to several mammalian species including cows in the United States and marine mammals in South America.

Human cases have been reported in people who have had close contact with infected animals, but fortunately there’s currently no sustained spread between people.

While detecting influenza in animals is a huge task in a large country such as Australia, there are systems in place to detect and respond to bird flu in wildlife and production animals.

It’s inevitable there will be more influenza pandemics in the future. But it isn’t always the one we are worried about.

Attention had been focused on avian influenza since 1997, when an outbreak in birds in Hong Kong caused severe disease in humans. But the subsequent pandemic in 2009 originated in pigs in central Mexico.

Coronaviruses: an ‘unknown known’

Although Rumsfeld didn’t talk about “unknown knowns”, coronaviruses would be appropriate for this category. We knew more about coronaviruses than most people might have thought before the COVID pandemic.

We’d had experience with severe acute respiratory syndrome (SARS) and Middle Eastern respiratory syndrome (MERS) causing large outbreaks. Both are caused by viruses closely related to SARS-CoV-2, the coronavirus that causes COVID. While these might have faded from public consciousness before COVID, coronaviruses were listed in the 2015 WHO list of diseases with pandemic potential.

Previous research into the earlier coronaviruses proved vital in allowing COVID vaccines to be developed rapidly. For example, the Oxford group’s initial work on a MERS vaccine was key to the development of AstraZeneca’s COVID vaccine.

Similarly, previous research into the structure of the spike protein – a protein on the surface of coronaviruses that allows it to attach to our cells – was helpful in developing mRNA vaccines for COVID.

It would seem likely there will be further coronavirus pandemics in the future. And even if they don’t occur at the scale of COVID, the impacts can be significant. For example, when MERS spread to South Korea in 2015, it only caused 186 cases over two months, but the cost of controlling it was estimated at US$8 billion (A$11.6 billion).

The 25 viral families: an approach to ‘known unknowns’

Attention has now turned to the known unknowns. There are about 120 viruses from 25 families that are known to cause human disease. Members of each viral family share common properties and our immune systems respond to them in similar ways.

An example is the flavivirus family, of which the best-known members are yellow fever virus and dengue fever virus. This family also includes several other important viruses, such as Zika virus (which can cause birth defects when pregnant women are infected) and West Nile virus (which causes encephalitis, or inflammation of the brain).

The WHO’s blueprint for epidemics aims to consider threats from different classes of viruses and bacteria. It looks at individual pathogens as examples from each category to expand our understanding systematically.

The US National Institute of Allergy and Infectious Diseases has taken this a step further, preparing vaccines and therapies for a list of prototype pathogens from key virus families. The goal is to be able to adapt this knowledge to new vaccines and treatments if a pandemic were to arise from a closely related virus.

Pathogen X, the ‘unknown unknown’

There are also the unknown unknowns, or “disease X” – an unknown pathogen with the potential to trigger a severe global epidemic. To prepare for this, we need to adopt new forms of surveillance specifically looking at where new pathogens could emerge.

In recent years, there’s been an increasing recognition that we need to take a broader view of health beyond only thinking about human health, but also animals and the environment. This concept is known as “One Health” and considers issues such as climate change, intensive agricultural practices, trade in exotic animals, increased human encroachment into wildlife habitats, changing international travel, and urbanisation.

This has implications not only for where to look for new infectious diseases, but also how we can reduce the risk of “spillover” from animals to humans. This might include targeted testing of animals and people who work closely with animals. Currently, testing is mainly directed towards known viruses, but new technologies can look for as yet unknown viruses in patients with symptoms consistent with new infections.

We live in a vast world of potential microbiological threats. While influenza and coronaviruses have a track record of causing past pandemics, a longer list of new pathogens could still cause outbreaks with significant consequences.

Continued surveillance for new pathogens, improving our understanding of important virus families, and developing policies to reduce the risk of spillover will all be important for reducing the risk of future pandemics.

This article is part of a series on the next pandemic.

Allen Cheng, Professor of Infectious Diseases, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.