On behalf of Genetic Alliance UK I attended the World Congress on Genetic Counselling, 4-6 October 2017, at the Wellcome Genome Campus. We were able to share our recent work with interested genetic professionals and raise awareness of both Genetic Alliance UK and SWAN UK (syndromes without a name). Genetic counsellors from around the world gave interesting talks. Here I have pulled out some of the common themes from the conference.
Inspiring Participation in Genomics
Language around ‘genomics’ has moved from the clinic into the general public, and we are all expected to understand these new terms. Hearing about public figures’ experiences, like Angelina Jolie undergoing genetic testing for the BRCA gene, has increased people’s awareness of genetically-linked conditions, and the process of testing for genetic conditions within a family.
Although news around genomics is regularly reported in the media, research from Dr Anna Middleton, a Genetic Counsellor from the Wellcome Genome Campus, has found some astonishing facts:
82% of the public are not sure what a ‘genome’ is
Only 18% of the public have a good understanding of ‘genomics’
50% hadn’t heard of the term ‘genomics’
Genetic counsellors and healthcare professionals need this to change. Anna highlighted how we can use film and visual aids to inspire participation in the discussion and understanding of genetics.
Feedback at workshops attended by the project participants has developed key recommendations for scientists and healthcare professionals when talking about genomics to a non-expert audience, and gives help on the terms and phrases we should use and avoid. We hope that this work will standardise the way genomics is spoken about.
Genetic counsellor vs. online genetic test
Now anyone can order a genetic test online to find out what conditions they are at risk of, where do genetic counsellors come in?
Genetic tests have been pushed into the spotlight, and increasing numbers of companies are offering cheap, quick tests that only require a saliva sample and a fee. This brings about a major problem; it is so easy to gain these results and many aren’t thinking about what they will mean, or how they will understand the information they have been given.
Genetic counsellors oversee a number of genetic tests in the clinic. These include pre-implantation genetic diagnosis (PGD), pre-natal screening, and testing children and adults. At a consultation at a local regional genetics clinic, genetic counsellors explore patient understanding of a genetic condition, the implications of finding out their risk or diagnosis, and what this will mean for them and their family. When all of this has been understood, a genetic test can be arranged. This method ensures the genetic data is useful and meaningful to the patient.
See an example of what a genetic counselling consultation is like here.
Data sharing in genomics
Your DNA, your say asked its 10,000 participants if they would share their genomic data with medical doctors. 51% of the public said yes, yet only 28% said yes to profit-making industries, suggesting the public make these judgements based on trust.
Research into the 100,000 genome project , presented by UK Research Fellow Sandi Dheensa, shows people that support the NHS are more likely to consent to data sharing, despite the work being carried out externally by Genomics England. Consent was also more likely to be given by those with a history of a genetic condition. We found similar results in our 2015 online engagement project, My Condition, My DNA, where 93% of patient participants affected by a rare or genetic condition wanted their genomic data shared in research. However, akin to findings from the public, this number decreases with private companies (38%) and government institutions (31%).
Common concerns reside about data security, privacy and access. Popular culture has been found to influence views on sharing, linking to concerns such as DNA being planted at crime scenes. Many identify this genomic data differently to other medical information, due to its links to their ancestry and germ line.
These findings highlight the need to increase communication on confidentiality in data sharing, information on how it is used and awareness of the benefits of sharing in research.