X Close

‘Health Chatter’: Research Department of Behavioural Science and Health Blog

Home

Menu

Can we help the public understand the concept of ‘overdiagnosis’ better by using a different term?

By rmjdapg, on 28 June 2018

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

We have previously written about ‘overdiagnosis’ – the diagnosis of an illness that would never have caused symptoms or death had it remained undetected – and how the majority of the public are unfamiliar with the concept and find it difficult to understand. We have also looked at the various ways that health websites describe it in the context of breast cancer screening; we previously found that most UK websites include some relevant information, in contrast to the last similar study from 10 years ago. This led us to think about how it might be possible to better explain the concept to people. Although ‘overdiagnosis’ is the most commonly used label, its meaning is probably difficult to infer if people are unfamiliar with it (and most people are). We wanted to test whether other terms might be seen as more intuitive labels that would help communicate the concept to the public.

We carried out a large survey in which we asked around 2,000 adult members of the public to read one of two summaries describing overdiagnosis. These summaries were based on information leaflets that the NHS has already used extensively in England. We asked people whether any of a series of possible alternative terms made sense to them as a label for the concept described and whether they had encountered any of the terms before.

What did we find?

A fairly large proportion of people (around 4 out of 10) did not think any of the seven terms we suggested were applicable labels for the concept as we described it. We also found that no single term stood out as being seen as particularly appropriate. The term most commonly endorsed (“unnecessary treatment”) was only rated as appropriate by around 4 out of 10 people. Another important finding was that around 6 out of 10 people had never encountered any of the terms we suggested and that the most commonly encountered term (“false positive test results”) was only familiar to around 3 out of 10 people. You can read the full paper here.

What were our conclusions?

We were disappointed that we did not find a term that was clearly considered to be an intuitive label for the concept of overdiagnosis. However, this was not entirely surprising because we know from several studies that it is unfamiliar to most people. It is not a given that this will always be the case: Organisations like the NHS and health charities are continually telling the public about overdiagnosis in various ways and if the concept becomes more familiar and better understood, people may be more inclined to identify a term that makes sense and which can then be used to communicate the concept. It is also possible that terms other than the 7 we looked at might already be suitable. Since the terms we looked at were generally unfamiliar, one recommendation we can make in the meantime is that it might be better to avoid specific labels like “overdiagnosis” when communicating the issue to people; explicit descriptions might be more helpful.

Can the internet help the public understand ‘overdiagnosis’ in breast cancer screening?

By rmjdapg, on 20 April 2016

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In our last blog, we talked about ‘overdiagnosis’, a concept that many people are unfamiliar with – that is, when a medical test finds an illness that would never have caused any harm during a person’s lifetime.

As a follow-up study, we were interested in how much information the UK and Australian public could find online about overdiagnosis in the specific context of breast cancer screening.

Why breast cancer screening?

We chose breast screening because it is a setting in which the issue of overdiagnosis has received a lot of attention in the UK in recent years: in 2011, Cancer Research UK and the Department of Health commissioned a review of studies with the aim of understanding how much overdiagnosis happens in breast screening.

Likewise, the NHS recently made substantial changes to the information leaflets provided to women invited for breast screening, with the aim of ensuring that they would understand that overdiagnosis was one possible outcome of being tested.

Breast screening sometimes diagnoses ‘ductal carcinoma in situ’ or ‘DCIS’, which is an abnormality that can become a symptomatic cancer over time. However, it can also be slow growing and never pose a health risk, meaning that a large proportion of overdiagnosis in breast screening is due to DCIS.

As well as finding out what kind of information people could find about overdiagnosis on health websites, we were interested in what explanations those websites provided about DCIS, and also what kinds of statistics were used to give the public a sense of how many people are affected by overdiagnosis.

We used a Google search for ‘breast cancer screening’ to find the most relevant health websites in the UK and Australia (such as NHS Choices and Cancer Australia). We examined in detail ten websites from the UK and eight from Australia.

What did we find?

Our main findings were that most UK websites included some information about overdiagnosis and also DCIS. The websites provided a range of statistics stating, for example, that every year around 4,000 women in the UK are overdiagnosed and overtreated following screening and that around 3 in 200 women screened would be overdiagnosed and overtreated (considering women aged between 50 and 70 years undergoing screening every three years).

Such information was available less often on Australian websites, although the kind of information was similar when it was present (and several websites linked to more detailed websites instead of hosting the information themselves).

Why is this important?

One reason for doing this research was that a similar study had been carried out more than ten years ago in 2000, showing that overdiagnosis and DCIS were rarely described. We thought that things might have changed in the meantime as more and more people use the internet to understand health issues.

In fact, we found that although not every piece of information on overdiagnosis and DCIS is available on every website, it is more available than it was in the past. In time, this might lead to a greater level of public awareness about the issue.

What does the UK public understand by the term ‘overdiagnosis’?

By rmjdapg, on 14 April 2016

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In recent years, doctors and academics have become more and more interested in a problem referred to as ‘overdiagnosis’. There are several ways that overdiagnosis can be defined.

One particularly useful way is to think of it as the diagnosis of a disease that would never have caused a person symptoms or led to their death, whether or not it had been found through a medical test. In other words, even if a person had not had the test, the disease would never have caused them any harm.

Catching it early

It may not be obvious how this can happen. As an example, imagine a woman going for breast screening, which tries to find cancer at an early stage, before it starts causing symptoms.

The thinking behind this type of test is that if the disease is found early, it will be easier to treat and there is a higher chance of curing it. Most people are familiar with this idea that ‘catching it early’ is a good thing.

So, suppose a woman who has no symptoms goes for screening and the test finds cancer: she would usually go on to have treatment (e.g. surgery).

However, although she has no way of knowing for sure, it is possible that the cancer was growing so slowly that she would have lived into old age and died of something unrelated, without ever knowing about the cancer, had she not gone for screening.

The cancer is real but the diagnosis does not benefit the woman at all; it results in treatment that she did not need (‘overtreatment’). In fact, if she had not had the screening test, she would have avoided all the problems that come with a cancer diagnosis and treatment.

What research has found

If you find the idea of overdiagnosis counter-intuitive, you are not alone. Several studies have tried to gauge public opinion on the issue and found that this is a fairly typical view, partly because the notion that some illnesses (like cancer) might never cause symptoms or death is one that does not receive much attention and is often at odds with our personal experiences.

Results from an Australian study in 2015 found that awareness of ‘overdiagnosis’ is low – in a study of 500 adults who were asked what they thought it meant, only four out of ten people gave a description of the term that was considered approximately correct and these descriptions were often inaccurate to varying degrees.

For example, people often thought in terms of a ‘false positive’ diagnosis (diagnosing someone with one illness when really they do not have that illness at all), or giving a person ‘too many’ diagnoses.
Is this the same in the UK?

We wanted to find out whether this was also true in the UK. We asked a group of 390 adults whether they had come across the term ‘overdiagnosis’ before and asked them to describe what they thought it meant in their own words, as part of an online survey.

We found that only a minority (three out of ten people) had encountered the term and almost no-one (10 people out of all 390) described it in a way that we thought closely resembled the concept described above.

It was not always clear how best to summarize people’s descriptions but we found that people often stated that they had no knowledge or had similar conceptions to the Australian survey such as ‘false positives’ and ‘too many’ diagnoses.

Some descriptions were somewhat closer to the concept of overdiagnosis such as an ‘overly negative or complicated’ diagnosis (e.g. where the severity of an illness is overstated) but there were also some descriptions that we found more surprising such as being overly health-conscious (e.g. worrying too much about health issues).

Room for improvement

Many people who work in public health and healthcare believe that people should be aware of the possibility of overdiagnosis, particularly since they will eventually be offered screening tests in which there is this risk.

In this respect, our findings show that there is substantial room for improvement in how we inform the public about overdiagnosis. In part, this may be due to the term itself not having an intuitive meaning, in which case other terms might be more helpful (for example the term ‘unnecessary detection’).

This could be tested in future studies. Our findings also motivated us to find out the extent to which trusted information sources (such as websites run by the NHS and leading health charities) are already providing information on overdiagnosis.

We would like to share the findings from this study in a follow-up blog post. We will be posting this here soon.

This was originally posted on the BioMed Central blog network.

Getting a ‘hint’ about social inequalities in cancer information seeking

By Lindsay C Kobayashi, on 22 September 2015

Have you ever searched for information about cancer? Chances are, if you have, it was a Google search that led to a website like WebMD, the Mayo Clinic, or a charity such as the American Cancer Society or Cancer Research UK. Research on cancer information seeking behaviour of the public tells us that most people first turn to the Internet, with more in-depth searching possibly extending to talks with friends, family, and health professionals. But who searches for cancer information? We already know that people in America who actively seek out information about cancer are most often well educated, have a high income, are under age 65, are white, and have a usual source of health care (1).

Currently, the global rise in cancer incidence has coincided with the technological revolution that sees internet and mobile usage increasing across the globe (2). As a result, searches for cancer information have increased among the public, but these increases are occurring disproportionately among people with higher levels of education and income (3). This trend indicates that social inequalities in health communications are widening, and will continue to do so. The outcome would be that people who are the best educated and most economically advantaged would have the best opportunities for access to, and use of, information about cancer to help them make informed decisions about prevention and early diagnosis.

To learn more about this issue, we conducted a study investigating the relationships between literacy, cancer fatalism, and active seeking of cancer information (4). Cancer fatalism can be described as deterministic thoughts about the external causes of the disease, the inability to prevent it, and the inevitability of death at diagnosis (5). We wondered whether low literacy and cancer fatalism pose barriers to seeking cancer information, and in particular whether low literacy might lead to fatalistic beliefs about cancer, which might then in turn stop people from seeking out cancer information.

 

Figure 1

Our logic model of the relationships between low health literacy, cancer fatalism, and cancer information seeking

 

We used data from the publicly available U.S. Health Information National Trends Survey (HINTS). The HINTS is a great resource for anyone who interested in trends in the use of cancer-related information among the general American public. The survey is nationally representative of American adults aged 18 years and over. We used data from the third cycle of the fourth round of HINTS, which was conducted in 2013. We used data from 2,657 American adults who had no cancer history. The measures of interest were:

Health literacy

  • Reading comprehension of a nutrition label, scored out of 4 points

Cancer fatalism

  • Agreement/disagreement with each of three statements:
  • “It seems like everything causes cancer”
  • “There’s not much you can do to lower your chances of getting cancer”
  • “When I think about cancer, I automatically think about death”

Cancer information seeking

  • Asked respondents whether they had ever searched for cancer information

The results shown below are representative of the American public aged 18 years and over.

What did we find?

One-third (34%) of American adults had low literacy, according to our measure. This is a substantial proportion of the population, given that the measure assessed basic reading comprehension of a nutrition label, which is important for health.

Most American adults (66%) agreed that, “it seems like everything causes cancer”. However, most disagreed (71%) with “there’s not much you can do to lower your chances of getting cancer”. Responses were more evenly balanced to, “when I think about cancer, I automatically think of death”, with 58% agreeing.

Just over half (53%) of the American public had ever searched for information about cancer. Independently of sociodemographic factors, adults with low literacy were less likely to search for information than those with high literacy. People who agreed that, “there’s not much you can do to lower your chances of getting cancer” were also less likely to search for cancer information. The other two fatalistic beliefs were not associated with cancer information seeking, but people with low income and low education were less likely to actively seek out cancer information.

Finally, we found that while literacy had a strong direct effect on cancer information seeking, the fatalistic belief, “there’s not much you can do to lower your chances of getting cancer” explained about 14% of the effect of literacy on cancer information seeking. This means that people with low literacy are slightly more likely to hold this fatalistic belief, which in turns acts as a barrier to seeking out information.

What does it mean?

This study indicates that addressing health literacy and fatalism about cancer prevention should be a priority for future cancer communication strategies. Population groups with less access to health care, who are the most vulnerable to low literacy and fatalistic beliefs about cancer, are also the least likely to benefit from cancer information. We feel that strategies to improve public beliefs and knowledge about cancer might be best placed outside of the clinical environment. For example, advertising strategies and public events in opportunistic settings such as road shows might help to increase incidental exposure to cancer information among those people who are least likely to actively seek it (6-8). Communication strategies such as patient narratives, such as those found on the Prevent Cancer Foundation website, also show promise. Overall, fatalism and health literacy may represent useful targets for cancer control strategies aiming to increase all people’s abilities to manage their risk of cancer, and to reduce social inequalities across the continuum of cancer control.

The full paper is available at Health Education and Behavior.

References

  1. Finney Rutten LJ, Squiers L, Hesse B. Cancer-Related Information Seeking: Hints from the 2003 Health Information National Trends Survey (HINTS). J Health Commun 2006;11:147-156. doi: 10.1080/10810730600637574
  2. Viswanath K. The communications revolution and cancer control. Nat Rev Cancer 2015;5:828-835. doi:10.1038/nrc1718
  3. Finney Rutten LJ, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, et al. Cancer-related information seeking among cancer survivors: Trends over a decade (2003-2013). J Cancer Educ 2015 [Epub ahead of print]. doi:10.1007/s13187-015-0802-7
  4. Kobayashi LC, Smith SG. Cancer fatalism, literacy, and cancer information seeking in the American public. Health Educ Behav 2015 [Epub ahead of print]. doi: 10.1177/1090198115604616
  5. Niederdeppe J, Levy AG. Fatalistic beliefs about cancer prevention and three prevention behaviors. Cancer Epidemiol Biomarkers Prev 2007;16:998-1003.
  6. Ironmonger L, Ohuma E, Ormiston-Smith N, Gildea C, Thomson CS, Peake MD. An evaluation of the impact of large-scale interventions to raise public awareness of a lung cancer symptom. Br J Cancer 2015;112:207- 216. doi:10.1038/bjc.2014.596
  7. Power E, Wardle J. Change in public awareness of symptoms and perceived barriers to seeing a doctor following Be Clear on Cancer campaigns in England. Br J Cancer 2015;112:S22-S26. doi:10.1038/bjc.2015.32
  8. Smith SG, Rendell H, George H, Power E. Improving cancer control through a community-based cancer awareness initiative. Prev Med 2014;60:121-123. doi:10.1016/j.ypmed.2013.11.002

How should we talk about cancer?

By rmjlmko, on 2 September 2015

By Claire Friedemann Smith, Charlotte Vrinten, and Monica Koo

Words are powerful. One area where this is undeniably true is in our communication around health and illness: the words we use have the power to comfort and support, or isolate and dishearten. The tricky thing is, one person’s call to arms could be another’s final straw. This makes it very important to think about how we as researchers, and the wider medical community, talk about illness, particularly illnesses that are very emotionally charged such as cancer. Last week, the cancer screening and early diagnosis group at the HBRC discussed a presentation on this subject given by Professor Elena Semino about the use of metaphors in communication around cancer, recorded at Cancer Research UK earlier this year.

Professor Semino presented the results of a large mixed methods study she had led into the use of metaphors by patients and healthcare professionals when talking about cancer. The team used both qualitative and quantitative methods to analyse two datasets based on online material by patients and healthcare professionals. The researchers found that the metaphors used by patients and healthcare professionals broadly fell into two categories: ‘violence’ and ‘journey’ metaphors. Violence metaphors were used to describe cancer as an enemy to be fought, using drugs and medical research as weapons, with the aim of conquering the disease and winning the battle by surviving the cancer. Journey metaphors, on the other hand, describe cancer as a road to travel, with an uncertain destination.

The use of metaphors is probably familiar to any of us who have seen adverts raising money for cancer research or have had personal experience of talking about cancer. This study found that using these metaphors could have both positive and negative consequences for patients. For some patients, the thought of fighting a battle to defeat cancer galvanised and motivated them in their attitude towards cancer treatment, and patients often encouraged each other and described success in treatment using violence metaphors. But others felt disempowered by this metaphor: they felt that it was the disease conquering them rather than the other way around. Professor Semino highlighted how violence metaphors may be particularly inappropriate for terminal cancer patients for whom thinking of cancer as a “losing battle” could be demoralising and could lead to feelings of being blamed and stigmatised by others for “not fighting hard enough”.

So were journey metaphors the better option? The researchers found that journey metaphors were similarly used in both positive and negative ways. Some patients used journey metaphors to express a sense of purpose and companionship: those with new diagnoses were being led by others who had started their journey before them and understood what they were going through because they had travelled the same road. Other patients used the journey metaphor to express their disempowerment and lack of control as they were travelling against their will, on a journey they could not control, and along a road they did ‘not even wish to be on’.

There are many other metaphors that may be used to describe cancer: for example, BBC producer Andrew Graystone described his cancer as “an unwelcome lodger”. Others have described cancer as a “scary fairground ride” where you just have to hang on until you can get off. Professor Semino concluded that when discussing cancer with patients, we should adopt a particular metaphor depending on the individual patients’ preferences, and in mass communications we should use metaphors that work positively for most people and do not harm others.

With this in mind, Professor Semino and her colleagues are developing a “metaphor menu” for cancer patients to provide alternatives to the common battle and journey metaphors. This led to a lot of interesting discussion here at the HBRC around how this would be presented to patients. When would it be appropriate to offer it? How effective would it be when violence and journey metaphors continue to dominate cancer discussions in the mass media? Although we did not come up with any definite answers to these questions, we are very much looking forward to seeing how the metaphor menu will be taken forward.

It is also interesting to consider the implications of violence metaphors for public health. Recent work by Hauser and Schwarz suggests that violence metaphors may make people less likely to engage in some cancer prevention behaviours, such as stopping smoking or limiting alcohol intake. But just like Professor Semino’s research showed, not all violence metaphors are bad. A study on flu vaccinations found that violence metaphors actually increased people’s willingness to get a flu jab. The question then becomes: when is it appropriate to use violence metaphors in public health communications?

Although more research on the topic is needed, Hauser and Schwarz suggest that violence metaphors encourage an aggressive attitude towards an enemy and promote an active attack on this enemy. So violence metaphors may be helpful when we need to actively do something to protect against cancer (for example, exercising or eating more fruit and veg), but may not be so helpful when we need to limit ourselves to reduce the risk of cancer, as with stopping smoking, reducing alcohol intake, or losing weight. Violence metaphors may be inappropriate in these circumstances, and may even be harmful for public health.

Professor Elena Semino’s presentation and the discussion that followed shed light on an issue that is rarely at the forefront of our minds as cancer researchers. It emphasised the importance of language in how we understand and process our experiences, and how we express our emotions and feelings. Importantly, it also highlighted that the ways we choose to talk about cancer may positively or negatively influence patient experiences and public health. As we get better at preventing, detecting, diagnosing, and treating cancer, it will be interesting to see how the language we use to talk about cancer evolves in the future.

References
Graystone A. (2013) Viewpoint: Did Richard Nixon change the way people describe cancer? BBC News Magazine.

Hauser DJ, Schwarz N. (2014) The War on Prevention: Bellicose Cancer Metaphors Hurt (Some) Prevention Intentions. Personal Soc Psychol Bull 41:66–77.

Scherer AM, Scherer LD, Fagerlin A. (2015) Getting ahead of illness: using metaphors to influence medical decision making. Med Decis Mak 35:37–45.

Semino E, Demjen Z, Demmen J, Koller V, Payne S, Hardie A., et al. (2015) The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Support Palliat Care 1–7.

Semino E. (2014) A ‘metaphor menu’ for cancer patients. Ehospice UK.

Letting your imagination run wild – genetic testing for risk of weight gain

By Susanne F Meisel, on 5 April 2013

These are exciting times for people working in genetics.  The field has become trendy.  ‘DNA’, ‘genes’ and ‘genetic code’ are no longer specialist terms, but used casually in everyday language. The media love ‘The gene for’ stories  and attributing individual differences to biology and less to environment is becoming commonplace.  I recently read an interview with a singer who explained that she could not imagine being anything else but a singer, because singing ‘was in her DNA’. If this still does not convince you: The pop band ‘Little Mix’ recently released a new song titled ‘DNA’ (http://www.youtube.com/watch?v=D3h-lLj3xv4).

Why the fascination with genes?  To a degree, it appears to stem from the inherent assumption that our genes can give us insights into ourselves that would otherwise remain inaccessible. Although our DNA is  99.9% identical, this is not interesting – it is all about the tiny bit of difference, the bit which sets us apart and makes us unique.

Companies have been quick to capitalise on our curiosity of what would be possible once the Human Genome was decoded.  Genetic tests for an array of traits and conditions, including those that are common and driven by lifestyle, such as obesity or heart disease, are already available over the Internet.  So far, we are not sure about the effects of giving this type of information to people. It could be that people will use it to prevent the condition. Alternatively, it could be that they become fatalistic or complacent. I have written in more detail about the current debate in a previous blogpost ( http://tinyurl.com/bve6y2m).  I hope to add some evidence to the debate by looking at the psychological and behavioural consequences of receiving genetic test feedback using obesity as an example for a very common, very complex condition.

Because we do not know yet how people react to knowing about their genetic susceptibility to weight gain, it would be unwise to give them this information right away.  Instead, we set up an online study where people were asked to imagine their reactions to receiving a ‘higher-risk’ or an ‘average-risk’ genetic test result for weight gain. They were then asked questions on a broad range of feelings and behaviours. We included 2 sets of people, nearly 400 students, who were predominantly of healthy weight and almost as many people from the general public who were or had been overweight.

Results showed that people in both groups reported to be more motivated to make lifestyle changes after imagining getting a ‘higher’ genetic risk result than after imagining getting an ‘average’ genetic risk result. On average, negative feelings and feelings of fatalism were anticipated to be very low and did not differ between risk scenarios. Those who were already overweight or obese were more likely to think that in comparison with an ‘average’ genetic risk result, receiving a ‘higher’ genetic risk result would offer them an explanation for their weight status.  Finally, people in both groups thought that they would be more likely to seek out information about what their result means in the ‘higher-risk’ than in the ‘average-risk’ scenario.

These findings are good news, because they suggest that giving people feedback for susceptibility to weight gain is unlikely to have unanticipated negative effects, and may even be motivating.  Furthermore, people who are already overweight may also benefit from genetic feedback.  However, these findings may not hold up once people are actually given genetic test feedback, because they only tell us about what people think they might do – and people find it generally quite difficult to imagine to be negatively affected by an event.  The next step is now to give people ‘real’ genetic feedback for risk of weight gain to discover the effect of this type of information.

 

Reference:

Meisel, S. F., Walker, C., & Wardle, J. (2011). Psychological Responses to Genetic Testing for Weight Gain: A Vignette Study. Obesity (Silver Spring); 20 (3).DOI: 10.1038/oby.2011.324

 

Looking into the genetic crystal ball – A personal account of taking a direct-to-consumer genetic test

By Susanne F Meisel, on 25 November 2011

There it sits, on the counter, the vial which holds the key to knowledge, everything from ancestral lineage over earwax texture to my memory capacity. My strengths and weaknesses, the key to who I am…at least in genetic terms.

Proponents for direct to consumer genetic testing claim that a bit of spit contains everything I could possibly want to know about myself. The skeptics call it a genetic horoscope, as most results are no more accurate than traits attributed to star signs.

In recent years, companies emerged which offer genetic testing over the internet and promise to tell you more about your health and ancestry than you ever imagined.  With a couple of mouse clicks you can order one of their test kits, spit into a collection tube, seal it, send it back and within a few weeks you receive an email containing the link to a website which reveals your risk for a myriad of traits and diseases, half of which I would have trouble spelling, let alone pronounce.

Of course, doing a PhD in the subject calls for some self-experimentation, so my supervisor thought it would be a good idea for me to experience what this feels like … and this is how I ended up with a plastic tube full of spit.

It took me 3 days to send it off (apologies to the poor person in the lab who has to open that stinky tube). Why did it take me so long, I wonder? I consider myself as a curious individual interested in the latest scientific discovery, open to adopt new technologies…so why the hesitation?

I guess, because it felt like it could bring something to light which I might have happily left lurking in the dark. The 23andMe test I took reveals my risk for over 100 health conditions, some of which are quite severe, such as my risk for Huntington’s disease, Alzheimer’s or breast cancer. In addition, it shows my carrier status for various genetic diseases; my reaction to certain medications and finally personal traits such as memory capacity or the likelihood of ending up as an alcoholic. That, dear readers, is a lot of information. All at once, on one page.

Do I even want to know all of this? Even if I know that no cure exists for most of the diseases listed? The answer is: sort of. But, at this stage, only very few gene results can give meaningful risk estimations; most give only a minute indication of any change in risk – be it for better or for worse. The problem is also that conditions with exclusively genetic cause, such as Huntington’s Chorea, are listed with conditions where the picture is more complicated (for example in obesity).  This makes it very hard to know how much meaning to attach to a single risk result. I know I would be better off taking a long and hard look at my family history, if I wanted to get an idea of which diseases may be befalling me one day.

Nonetheless, I was incredibly curious to find out, and although my rational brain immediately told me that the results didn’t mean anything in the grander scope of things, they were all but unimportant. I felt something, and I definitely focused much more on the conditions where I was at a ‘higher risk’ than on those where I was classified as ‘average’ or ‘reduced risk’, regardless of what the actual risk estimation was.

The companies which provide direct to consumer genetic testing take quite a risk: They are providing medical results with minimal advice for conditions that many people may never have heard of, with risk estimations that don’t mean much objectively, but nonetheless seem to have an emotional impact – there is a lot of room for misunderstanding here.

For example, if I found out that my genetic risk of lung cancer is 6.8 % instead of the average of 6.2 %, then objectively that tells me that there is a whole host of factors other than my genes that play a role – however, because it is my personal  risk, it has some emotional meaning and in response

1. I could do the wise thing and stop smoking- advocates of these tests hope that we are using the information that we received to change our behaviour and prevent eventual illness

2. I could panic and ring my doctor for immediate 3 monthly check-ups – opponents of direct-to-consumer genetic testing fear that it might lead to unnecessary medical procedures

3. I could think that I will get lung cancer anyway and smoke even more, because of it – another concern of those cautioning against direct-to-consumer genetic testing

What will I do? What will other people do? I wouldn’t have been able to say before I took the test, because there is very little research on the subject to date. Now I know I will definitely not worry. But someone else might. It is an utterly individual experience, and there is certainly a good portion of narcissism attached.

Will I change anything? At the moment I am doing quite a lot of the ‘right’ things anyway, like being fairly active and eating sensibly (let’s keep quiet about the drinking) – but I’d like to think that it will have an impact when I am older. I think that it can be a positive influence on one’s health, because it raises awareness of potential illness and may be a motivation to look after oneself. Would I recommend it? Yes, but only if one is aware of the shortcomings of these tests, and if there is good information available about what the result means.

 

Despite all its criticisms, receiving those genetic results was a very unique experience, and I found out some things I am quite glad about. My eyes really are blue.  One thing, however, I didn’t look at: my genetic risk for Alzheimer’s disease. I think it would have been too disturbing to find out that I am more likely to get a severe illness for which there currently is no cure. But that was my individual choice. And that is what personalized genetic testing is all about.

 

 

Would you get tested? Why? Why not? Let me know below or send an email to Susanne.meisel.09@ucl.ac.uk