A DNA database in the NHS: the end of privacy?

by jeeg 12. December 2012 20:31

The government has announced plans to sequence the whole genomes of 100,000 patients in the NHS. This means every chemical letter in each person's DNA will be stored in their electronic medical records where it can be analysed statistically. Some, but not all, of the proposed group will be cancer patients and the project will also look at genetic mutations which arise in cancer cells as the cancer tumour grows.

The government says the project will be entirely voluntary as "patients will be able to opt out of having their genome sequenced without affecting their NHS care". But shifting to a system of "opt-out" rather than "opt-in" consent is hugely contentious. Opt-in consent – the international standard for patient care and research – requires people to be fully informed about how their data will be used and who will have access to it. But a new system of "presumed consent" to sharing electronic medical records with private companies was proposed by David Cameron earlier this year. This means that when people give their samples they will not be told about who will access their genetic data in the future. Google (which funds a gene test company called 23andMe run by Google founder Sergei Brin's wife), private healthcare companies, and the food, supplements and pharmaceutical industries are all keen to data-mine gene sequences and electronic medical records to predict people's risk of future illness and use these predictions as a tool for personalised marketing. This is the ultimate gravy train for IT, gene sequencing and healthcare companies because the market is the whole population, potentially from birth. One estimate suggests it could double the market for drugs sold to healthy people.

This week's announcement is in reality the first step on the way to implementing a proposal to sequence the whole population's medical records in the NHS, made by the Wellcome Trust's Sanger Centre, which pioneered gene sequencing, and the Human Genomics Strategy Group, which advises government. Its advocates are well aware that only a minority of people would opt-in to unlimited sharing of their genetic and health data. Hence, the proposed shift to the "opt-out" process and suggestions that babies' blood spots, taken for tests at birth and stored in their millions by many hospitals, could be used to obtain people's DNA. Although the government insists the data would be "anonymised" this is widely recognised to be impossible with whole genome data. This is because a person's genetic fingerprint can be obtained from everyday items such as coffee cups and matched with stored data to identify their records and those of their family. Governments, police, journalists, people's employers and insurers, or just nosy neighbours, would inevitably get access to personal information about medical conditions and non-paternity if such a database is built.

Whole genome sequences may prove useful for some individuals with undiagnosed genetic disorders. Sequencing cancer tumours (rather than individuals' profiles) might also provide some useful information for researchers in the longer term. But building a DNA database of every individual in the NHS is about expanding markets, not improving people's health. Enormous amounts of money would be required to build the database, probably as a public-private partnership. But predictions of disease risks or adverse drug reactions based on genetic data are not useful as screening tools for the whole population. Genes are poor predictors of most diseases in most people, not because of a lack of data but because complex diseases – like the weather – depend on many interacting factors, including lifestyle and environment. There is a massive opportunity cost in spending billions of pounds of taxpayers' money on genome sequencing rather than on public health approaches.

In specific circumstances, when they are useful, whole genomes should be collected and used with informed consent so that individuals can weigh up the benefits and risks. A blanket approach based on presumed consent will erode public trust in doctors and medical research and would mean the end of privacy.

Dr Helen Wallace is executive director of GeneWatch UK, UK Public Service



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