GenRes Study Day 2013
Attendees at the annual GenRes Study Day were rewarded with a
full and diverse programme that still left room for group members
to swap tips and tricks on study recruitment.
Formed and supported by the NIHR Collaborative Group for
Genetics in Healthcare (CGGH), the GenRes group is open to all
genetic research nurses, counsellors and coordinators involved in
recruitment to NIHR portfolio studies.
Dr Gill Borthwick, National Research Coordinator for the CGGH,
opened the day with good news all round. Genetics is currently the
top performing NIHR Specialty Group as judged by a number of the
NIHR key recruitment metrics.
There was also news of the advance of the NIHR UK Rare Genetic
Disease Research Consortium Agreement, which has also come to be
known as the 'Musketeers' Memorandum'. This initiative was
instigated to cut through some of the red tape that is particularly
prohibitive to clinical genetics research on rare diseases.
The Memorandum, which 18 UK NHS Organisations that
host Regional Genetic Services have now signed up to, was necessary
because in many cases 'more administrative staff were involved in
the permission process than there were patients with the disease',
Dr Borthwick said.
After the greeting, Professor Nazneen Rahman, head of genetics
and epidemiology at the Institute of Cancer Research (ICR), gave
attendees a whistle-stop tour of cancer genetics; at barely more
than half an hour long, there was a lot of ground to cover.
Professor Rahman began by outlining some of the basics before
discussing the three portfolio studies - BOCS, FACT and COG - for
which she is the Chief Investigator. Along the way there were
corrections of common misconceptions ('Myriad did not discover
BRCA2; it was discovered at the ICR!') and news of the ambitious
Mainstreaming Cancer Genetics programme. This project began this
year and looks at a host of issues relevant to the integration of
routine genetic testing in cancer patient care.
A talk on ethics by a professor at the University of Oxford may
have set some fearing 40 minutes of airy philosophising, but the
presentation by Professor Michael Parker, Director of the Ethox
Centre, was no less grounded in everyday genetics research than
Much of the discussion led by Professor Parker focused on
consent and its importance in genetic research. After a quick look
at how ethicists classify responses to research dilemmas, attendees
were given a case study to consider. Although the study in question
looked relatively straightforward - and was entirely plausible - it
threw up a wealth of ethical questions.
Two group sessions followed lunch. In the first, representatives
from genetics portfolio studies presented news of how they were
getting on and Lauren Roberts gave an update on SWAN UK activities.
Then came a group discussion on 'Recipes for Recruitment'. This
session was concluded by Professor Sir John Burn, leader of the
CGGH in somewhat geographically partisan fashion.
Success in study recruitment, said Sir John, could be summed up
in four key concepts. Firstly there was 'Theatre' - the importance
of being enthusiastic about a study; then came 'Organisation'; next
it was 'OK to ask' patients or clinicians about possible
involvement; and finally there's 'Networking' which meant 'getting
out there' and not just 'sitting behind a desk, sending e-mails'.
Of course, the first letters of those ideas spell out a word close
to Sir John's heart.
Sir John could hardly be accused of a lack of 'Theatre' during
the final talk of the day focusing on the CaPP3 study which he is
currently leading. CaPP3 follows on from CaPP2, which showed that
daily aspirin significantly decreases the risk of bowel cancer in
people with Lynch syndrome, a cancer predisposing genetic
CaPP3, which was awarded a grant of £1.4 million from Cancer
Research UK, is primarily a dose-finding study. Sir John's run
through the history of the CaPP programme was a highly engaging
tale of the challenges that can arise with multi-centre
See the Programme
for the day.