GeneWatch PR: GeneWatch response to Human Genetics Commission report on personal genetic information

For immediate release – Tuesday 21st May 2002

GeneWatch UK warned that the need to control commercial exploitation of personal genetic information had been neglected in today’s "Inside Information" report from the Government’s human genetics advisors. GeneWatch stressed that failure to address this issue could lead to financial interests riding roughshod over people’s wishes and concerns.

However, GeneWatch welcomed several of the recommendations and the HGC’s commitment to openness and public consultation.

GeneWatch was critical of:

  • the recommendation that people could be asked to donate samples for medical research in general, with no specific information about the future uses of their genetic data;
  • the delay in considering a legal ban on genetic discrimination by insurers and employers and the adoption of a principle to avoid only "unfair" genetic discrimination, not all such discrimination;
  • the absence of any consideration of the patenting of genes by commercial companies.

"This report could be a charter for abuse by private companies," said Dr Wallace, Deputy Director of GeneWatch UK. "Without a person’s consent, insurers and employers could use donated samples to investigate how they could make future use of genetic test results. Later, they might exclude people from insurance and employment on the basis of this information. Drug companies could also patent people’s genes, restricting further research and development and increasing costs. People have a right to know who will be using their genetic information and their aims, whenever it is used."

GeneWatch welcomed the recommendation that there should be specific legislation to prevent genetic discrimination, but was deeply concerned that the use of the term "unfair discrimination" would leave huge loopholes in any future law.

"In a polluted workplace, genetic tests could be used to try to choose workers suited to the chemicals, instead of implementing proper safety standards. Who would decide if this was fair?" said Dr Wallace. "Insurers already take the view that discrimination is fair if it saves them money."

GeneWatch was more positive about the HGC’s proposals to enhance the privacy of genetic information and welcomed the HGC’s proposal that obtaining genetic information deceitfully or without consent should be a criminal offence. It also agreed with the HGC’s concerns about the potential misuse of the police forensic database and the need for independent oversight.

For further information, please contact:

Dr Helen Wallace, GeneWatch UK (Tel. 01298 871898. Mobile: 07903 311584

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