In a new briefing published today GeneWatch UK highlights the poor predictive value of genetic tests for common diseases (1). The organisation warned that the House of Lords Science and Technology Committee, which launches its 'Genomic Medicine' report today, is unlikely to recommend adequate gene test regulation to protect members of the public from misleading claims about their future health (2). Controversial plans to link genetic information to electronic medical records and share this data with private companies are also likely to be revived (3).
The new GeneWatch briefing shows why making predictions of who is at high genetic risk of diseases such as cancer and psychiatric illnesses is controversial amongst doctors and scientists, and why commercial genetic tests are misleading. However, the Lords appear likely to reject suggestions that the interpretation of genetic tests should be strictly regulated. This means that people could continue to be marketed a wide range of healthcare products and services based on spurious predictions of their genetic risk.
Private healthcare companies, the pharmaceutical industry, and web companies such as Google are all interested in data-mining genetic information collected via the NHS in order to make genetic risk predictions (4). The motivation is 'personalised' marketing of healthcare products to rich, healthy people categorised as 'genetically susceptible' to various diseases.
"People's personal medical and genetic information will become a gravy train for private healthcare companies if such data-mining goes ahead", said Dr Helen Wallace, Director of GeneWatch UK, "Failure to regulate misleading claims would be a green light to the snake oil merchants".
The Lords are likely to support new data-sharing plans as a way to conduct genetic research in the NHS as a public-private partnership (4). If adopted, they could mean that DNA from blood samples collected in the NHS will be sequenced by private companies without people's knowledge or consent, as part of Connecting for Health's Secondary Uses Service (SUS). The stored genetic information could be used to track individuals and their relatives as well as to categorise people based on their supposed genetic risk of various diseases.
"If everyone is tagged and categorised using their DNA, privacy will be wiped out", warned Dr Wallace, "The motivation isn't better health, but marketing by private companies and surveillance by the government".
For further information contact:
Dr Helen Wallace: 01298-24300 (office); 07903-311584 (mobile).
Notes for Editors
(1) The new GeneWatch briefing 'Examples of genes and common diseases' is available on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Examples_of_genes_and_common_diseases.doc
(2) The Committee's press conference will be held at 3pm, embargoed for Tuesday.
(3)
Controversial data-sharing plans in
Clause 152 of the Coroners and Justice Bill would have allowed a DNA database
to be built by stealth in the NHS. The plans were dropped by the Secretary of
State for Justice in February 2009, following massive public opposition.
Background information is available on: http://www.genewatch.org/sub-563487
(4) GeneWatch UK Briefing: Is early health good heath? April 2009. Available on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Data_mining_brief_fin_3.doc