(Cross-posted from Femme Vision)
Each week in the UK, news and feature pieces on fertility, pregnancy and childbirth proliferate in the mainstream media, in tabloids and broadsheets alike. Stories based on results of clinical studies on topics such as advances in fertility treatment, practices to ensure a healthy pregnancy and so on appear on a regular basis. But how accurately is the science being interpreted, how much is being omitted and how misleading are some of the headlines?
Headlines such as ‘1 in 3 will be infertile in 10 years’ (Daily Mirror, June 2005) and ‘Babies given Calpol and other forms of paracetamol are more likely to develop asthma’ (Mail Online, November 2012) certainly grab readers’ attention, but they also cause fear and anxiety in parents and prospective parents, who may not have the relevant medical knowledge to be able to look objectively at the evidence presented. (For those who are aware of it, the NHS does a valiant job of combating some of the inaccuracy and misinterpretation of clinical evidence in these stories with its Behind the Headlines section of the NHS Choices website.)
The commodification of fertility and childbirth
It is a sad fact that there is a high level of commercialisation around women’s health, which has undeniably increased in recent years, as health services become privatised. The areas of maternal health and fertility treatment are particularly affected. Vicky Garner wrote recently of seeing sales reps from a commercial ‘parenting club’ lurking on maternity wards handing out child benefit forms. Under the guise of offering support to complete the form, they were taking down the details of new mothers with a view to contacting them to market their services. She argues that the reps exploit women who are at their most vulnerable and anxious to give their newborns the best start in life; an anxiety that is heightened by the scare-mongering headlines we see every day.
When it comes to fertility treatment, it is easier to see where there are opportunities for profit to be made by private companies, given that fertility treatment is not universally available on the NHS (eligibility depends on where you live and other criteria). It therefore falls to private clinics to offer IVF treatment, and they can market and advertise their services as they wish. However, as Miriam Zoll wrote in an op-ed in the New York Times, ‘marketing and advertisements’ play their part in selling hope to ‘customers who are at their wits’ end, desperate and vulnerable’. Zoll speaks of the ‘debilitating trauma’ associated with failed IVF cycles and treatments, highlighting that, though fertility clinics offer, advertise and market services to paying customers as if they were any other for-profit company, when treatment fails it takes a significant psychological and emotional toll.
Hype and hope
A recent event at City University, London, looked at the intersection between science, the media and public engagement, in reporting advances in fertility treatment. The meeting, entitled ‘Hype, Hope and Headlines: How Should Breakthroughs in Fertility Treatment be Reported?’ questioned where responsibility should lie for accurately reporting advances in fertility treatment. Speakers Prof Simon Fishel, Managing Director of the CARE Fertility Group, who was part of the original team whose work produced the world’s first IVF baby in 1978; Prof Nick Macklon, Professor of Obstetrics and Gynaecology at the University of Southampton, and Director of the Complete Fertility Centre; and Dr Hannah Devlin, Science Editor at The Times, discussed the issues around this controversial topic.
Ahead of the meeting, Profs Fishel and Macklon and event organiser Connie St Louis spoke on BBC Radio 4’s Woman’s Hour. St Louis said that PR teams at IVF clinics often put out ‘overblown’ press releases, and she cautioned science journalists to be wary when producing stories based on clinical trials, particularly when a study is being publicised by the organisation that funded it. She also pointed to the lack of balanced argument in healthcare stories, and said that journalists should seek out a range of expert opinions in order to include different voices in stories on IVF.
On the other side of the argument, Fishel, though he agreed with the need for robust reporting of results and for peer review, cautioned that the best must be done to push the science of the field forward via mainstream media.
The City University event following the Woman’s Hour discussion was organised by the Progress Educational Trust (PET), an independent charity that aims to raise awareness of embryo and stem cell research, genetics and assisted conception and to engage with policymakers and medical professionals to inform debate. Fiona Fox, Founder and Director of the Science Media Centre – a charity that improves public trust in science by persuading scientists to engage more effectively with controversial science stories in the media – chaired the meeting.
Fishel stated his position on the debate topic, saying that information on developments in reproductive technology must be accessible to patients as and when it becomes available. As the pace of reproductive medicine moves so quickly, he said, it takes time for cutting-edge technology to filter through the medical profession, meaning that GPs and even some specialists do not understand or appreciate the breadth of the work done in fertility research. He pointed out that even the National Institute for Health and Clinical Excellence (NICE) can be too slow to issue guidance when seen from the perspective of a couple seeking new, improved therapies. When looking for clinical evidence to recommend a fertility treatment procedure, it is problematic to consider randomised, double-blinded, controlled trials to be the ‘gold standard’, he said. Because of their lengthy duration (15 years), by the time the results are available it will be too late for many couples, he argued, suggesting that other types of trials, such as cohort observational studies should be considered.
It is not always easy for journalists or the public to grasp that all scientific knowledge is provisional, he said. In other words, science is progressive, with improvement and advances being made all the time; however, the time in which a couple want and are able to have a baby is limited and they should be able to be access information on all current treatment options. The key lies in responsible communication to the media, he argued, so it is up to trial investigators, clinics and press officers to accurately communicate their evidence to the media and it is up to the media to look at the evidence before reporting.
Presenting a contrasting view, Macklon argued that when a couple see a headline proclaiming breakthroughs in fertility research, there is a danger of giving false hope that they will not only be able to access this new treatment, and that it will be successful. A relationship with the media is necessary to raise awareness and encourage funding of potential new treatments, he acknowledged, but if the relationship between clinics and the media is ‘too cosy’, this can lead to false hopes being raised. Macklon, in his argument, reminds us that there is a third party, the potential patient, who stands to lose out financially and emotionally, when ‘unproven technology’ is being offered in IVF clinics for profit. The patients are the ones paying the price for uncertainty, he said.
Devlin countered Macklon’s argument by accusing him of being ‘patronising’ to potential patients. She acknowledged that, as a journalist, IVF stories are always welcomed as the science is ‘easy to follow’ and is relevant to everyday life, encapsulating controversy, morality, life-changing events and they can be illustrated with ‘cute baby pictures’. Agreeing with Fishel, she posited that it is the job of journalists to filter out anything that might give false hope to patients, but that all developments, no matter what stage they are at, should be reported. She also highlighted that there is pressure from editors to cover stories reported by the majority of most national papers, to maintain competitiveness.
In the discussion following the speakers’ presentations, there was clearly a split in the audience between where it was felt that ultimate responsibility should lie for the accurate communication of clinical results to the public. One commenter suggested that patients seeking fertility treatment would not go to a medical journal to seek out the original research, thereby placing emphasis on the newspaper/journalist to offer balanced and accurate information. Another questioned the role of the PR or press officer in drafting a press release free of language and phrasing that might appear to sensationalise the facts. Concern was also raised over not withholding or omitting information and the need for the wider debate to move forward.
It was also emphasised that other expert opinions should be presented in a story and this would be the journalist’s responsibility to present alternative viewpoints. Macklon pointed out, however, that some doctors may have a vested interest in recommending a particular treatment (or, conversely, in not recommending it).
Does knowledge empower?
Fertility treatment is unlike any other area of medicine in many respects. Being largely provided in private practice, there is the market and, therefore, the finance available to plough into technological development; however, this means that the availability of evidence from (the so-called ‘gold standard’) randomised, controlled trials cannot keep up with the pace of development or the demands of the consumer/patient.
From the speakers’ presentations at the City University event and the discussion that followed, it seems clear that a collaborative approach is needed in order to responsibly and accurately communicate developments in the field of fertility treatment. Perhaps, as one commenter highlighted, this all points to the need for better-quality are more accessible patient information in the UK. But in lieu of this it would seem that it is the responsibility of all involved – press officers, journalists, and clinicians to communicate accurately and put in context any available information. Mutual trust, it would seem, is crucial when communicating science to the public.
The argument that knowledge is empowering for the patient certainly has merit, but it is important to bear in mind that both the media and the clinic stand to make commercial gain from the publishing of fertility stories. And as long as treatment remains in the private sector, there will remain a ‘cosy’ relationship between the media and the provider, however well hidden; the danger is that the patient, who should be at the centre of the discussion, will be open to exploitation.