Some British chest-pounding from the Financial Times:
Programmes involving millions of volunteers will cement Britain’s place as leader in DNA research
Clive Cookson in London YESTERDAY
Britain is embarking on a series of research projects in 2023 that will cement its place as a world leader in genomics.
They include the world’s largest genetic medicine initiative, with 5mn adults set to have their DNA profiles linked to lifestyle data and health records in a new project called Our Future Health.
At the same time a Newborn Genomes Programme will read the DNA of 100,000 babies — all 3bn letters of their genetic code — in order to detect childhood diseases. Other projects will focus on cancer and recording the genomes of ethnic minorities who have been under-represented in medical research. …
One strand is the Newborn Genomes Programme, which is being carried out by Genomics England, a publicly owned company. It focuses primarily on genetic mutations that cause rare childhood diseases. The government is investing a total of £175mn in the programme and in Genomics England’s other cancer and diversity initiatives.
The second strand will be carried out by Our Future Health, an independent charity, which has received £79mn from the government and more than £100mn from industrial partners. It will look for genetic variations that make people susceptible to common chronic conditions such as heart disease and type-2 diabetes, each of which affect an estimated 500mn people worldwide.
An initial 150,000 volunteers have already been recruited for Our Future Health through the internet, letters of invitation and five mobile hubs touring England. They agree to complete a health and lifestyle questionnaire, undergo a physical examination and provide a blood sample for genetic analysis.
Besides a distinction between a focus on rare and common diseases, another difference between the two programmes is that Genomics England emphasises the clinical benefits for participants, while Our Future Health is establishing a huge cohort of volunteers primarily for research.
“Our Future Health is building on a great British tradition of cohort studies and particularly on the success of UK Biobank, which is currently the world’s best,” said Ewan Birney, deputy director-general of European Molecular Biology Lab.
UK Biobank has received around £340mn from the government and charities since it was set up in 2004 as a decades-long project with 500,000 middle-aged volunteers, whose health would be linked to their lifestyle and genetics. Analysis of Biobank data is generating more than 500 research papers per year from scientists around the world, far more than any comparable medical database.
Participation in Biobank was entirely altruistic and volunteers received no information about their personal data. However, Our Future Health will provide feedback to people who want it, said Andy Roddam, its chief executive.
Both Our Future Health and Genomics England are also making a special effort to include representative samples of the population in their studies after Biobank was criticised for its disproportionate number of white middle-class volunteers.
Those damn middle-class whites are always volunteering entirely altruistically and thus ruining it for everybody.
Seriously, the DNA of five million Brits is a huge number.
A few obvious questions:
Will the database be available to Scotland Yard for crime-fighting? For example, the criminology doctoral student arrested yesterday in the murder of four college students in Idaho was tracked via his relatives’ genes. CNN reports:
Genetic genealogy helped investigators identify the suspect, a source with knowledge of the case said. DNA found in Idaho was taken through a public database to find potential matches for family members, the source said. Once potential family matches were found, subsequent investigative work by law enforcement led to the identification of Kohberger, according to the source.
And, will the data be available to scientists who don’t swear to find only politically correct findings? James Lee, the U. of Minnesota behavioral geneticist, who has headed the last two GWAS studies of educational attainment in up to 3 million individuals, recently wrote in City Journal:
The National Institutes of Health now blocks access to an important database if it thinks a scientist’s research may enter “forbidden” territory.