A new web-based antenatal screening service has been launched to supplement screening available on the NHS.
Genio, which offers antenatal screening for a wide range of conditions, was launched this month by Capex Health Services. Its directors believe that it is the first online service of its kind in the UK, but stress that they are using established screening providers whose services are fully approved.
Capex Group chief executive, Charles Lilley, told E-Health Insider: “The people who do the tests for us already have approved analysis software for this. We are taking an existing service in a single geography and making it available through the web.”
A glance at any mothers’ networking website shows that some women are already seeking antenatal screening privately, but Lilley explains that these services are usually small scale and local and rarely offer a full range of screening.
He believes there is a demand for an online service from parents who are inclined increasingly to make their own decisions about health matters, such as antenatal screening, and less likely to passively accept decisions about screening provision from the health service, the Department of Health or clinicians.
Genio director, Amanda Grossman, believes that there is also a huge educational job to do. She told E-Health Insider: “For me the key is about education and choice. Having worked on Genio for about a year, one of the things that has struck me forcibly – even talking to well-educated, well-read women – is that the level of ignorance about conditions and when they occur is absolutely staggering.”
“It’s made me realise it’s not just a question of providing choice, it’s about giving people information.”
Genio offers screening for: fragile X syndrome, Down’s syndrome, Edwards’ syndrome, cystic fibrosis, neural tube defects such as spina bifida, abdominal wall defects such as exomphalos and Cornelia de Lange syndrome in affected families. Prices range from £110 to £260.
When an order is made an instruction pack is sent through the post and the pregnant woman (or both partners for pre-natal screening) have a blood sample taken by their GP, nurse or midwife and send it back to Genio. Those selecting a test which includes an ultrasound scan have an appointment arranged by Genio.
Grossman explains that GPs and other professionals caring for the person being screened are kept in the loop.
“If a blood test comes up ‘screen positive’, the GP is informed first by phone before the letter is sent out,” Grossman explained.
Procedures are also in place to keep relevant professionals informed if a scan reveals problems requiring immediate attention.
Lilley and Grossman say it is too early to say what the uptake of the service will be but the site has attracted a ‘significant’ number of hits.
Tests for cystic fibrosis (CF) have attracted a lot of attention. Grossman believes this may be due partly to the higher profile given to CF since chancellor Gordon Brown and his wife, Sarah, disclosed that their baby son has the condition and partly because there is less information available generally about CF than Down’s syndrome.
Lilley says of Genio: “It’s the first of a number of services we are going to be launching to enable people to access screening and other health services which are not easily available as part of the NHS.”
The Department of Health issued guidance on screening for Down’s syndrome in November 2003, based on advice from the UK National Screening Committee and the National Institute for Clinical Excellence (NICE), and a department spokesman said that the guidance was presently being updated.
One of the aims of the 2003 guidance was to ensure the availability of high quality screening services for Down’s syndrome wherever patients live.
Lilley pointed out, however, that NICE guidance was not funded and decisions about funding services come back to the local health authority. Genio also extends screening beyond the tests for Down’s syndrome.
“The whole point about this is that we are offering a service where there is a gap in the market,” he said.