GeneWatch PR: GeneWatch UK response to Government White Paper on Genetics: Safeguards against genetic discrimination insufficient

For immediate release Tuesday 24th June 2003

Responding to the Government’s White Paper on Genetics today, GeneWatch UK warned that people would not be protected from genetic discrimination and that the need to avoid creating a genetic underclass is too important to be left to voluntary agreements. The increasing the use of genetic testing to identify individuals who are supposedly "genetically susceptible" to illness, or predicted to be hard to treat, could lead to a genetic underclass who are excluded from insurance and employment. No legal safeguards are proposed to prevent employers or insurers abusing genetic test information.

"The government has put the interests of industry above those of people. We face a future of creeping genetic discrimination unless steps are taken now" said Dr Wallace, GeneWatch’s Deputy Director. "There is a shocking lack of safeguards for people taking genetic tests. The White Paper does not address the gaping holes in the legislation".

GeneWatch also warned against the hype about genetics in the White Paper. GeneWatch welcomed Government plans to improve NHS services for those with genetic disorders, but questioned the emphasis on genetic factors in common, complex diseases and drug response and the Government’s new plan to consider genetic screening of every child at birth.

"Genes are poor predictors of common illnesses, so genetic tests are likely to be useless or misleading for most people. There is a real danger of treating healthy people for diseases they are never going to get. This would be bad for health and cripplingly expensive for the NHS," said Dr Helen Wallace, Deputy Director of GeneWatch UK.

Genetics is not the cure for all ills and will not address the major social and environmental causes of ill health. Common diseases, such as heart disease, diabetes and most cancers are strongly influenced by factors such as diet, smoking, poverty and pollution.

"The rising incidence of obesity in Britain is not due to an increase in genes for obesity, but to poor diets and lack of exercise. Testing patients for so-called ‘genes for obesity’ is good for companies who want to sell genetic tests and diet pills, but it is a poor health policy."

An individual’s response to medicines is also influenced by many non-genetic factors – for example, being elderly and taking more than one drug increases the dangers.

"Genetic tests for drug response cannot identify everyone who will react badly to a medicine. We need much better monitoring of dangerous or ineffective medicines and more listening to patients who complain of side effects."

- ends -

For further information contact:

Dr Helen Wallace

Tel: 01298-871898 (GeneWatch UK); 07903-311584 (mobile).

Notes to editors:

Although there is currently a moratorium on the use of most genetic test results by insurance companies, there is no legal ban. There are no laws to prevent employers from using genetic test results to decide who gets a job, and the Government has not yet signed the European Convention on Human Rights and Biomedicine, which prohibits genetic discrimination.

↑ Top