Government should outlaw theft of DNA, commission says

BMJ 2002; 324 doi: (Published 25 May 2002) Cite this as: BMJ 2002;324:1233
  1. Zosia Kmietowicz
  1. London

    Taking people's DNA without their knowing should be a criminal offence, says the United Kingdom's genetics watchdog.

    The advice to outlaw DNA theft is just one of a series of recommendations made by the Human Genetics Commission this week to protect personal genetic information from being misused—whether by research institutes, the police, employers, journalists, or family members who may have their own reasons for carrying out genetic tests without a person's consent.

    Altogether four new laws may need to be created to protect the public from inappropriate use of their personal genetic information and to maintain public trust and support for use of genetic information, says the commission, which is an independent advisory body.

    If its recommendations are accepted by the government, DNA theft could become a criminal offence in the next couple of years, although legal measures against discrimination on genetic grounds may take longer to reach the statute books, predicted Baroness Helena Kennedy, QC, chair of the commission.

    “We are not saying that people are not entitled to find out who had fathered a child, for example, but we are saying that it should be done with proper authority and consent, and if consent cannot be obtained then the next step would be to act through the courts,” she said. “People should be able to have some control over their personal genetic information.”

    The commission, which was set up in 1999 to investigate what measures were needed to protect people's genetic information in the face of advancing technology, has also advised the government to set up an independent body to marshal research databases and DNA collections against inappropriate access.

    Genetic databases set up for health related research, such as BioBank UK, should not be used for any other purpose and may need to be protected by the law. Also, any group, for example the Home Office or a research organisation, that wishes to access the DNA database held by the police should have to apply to the body and be cleared by an ethics committee. Legislation may also be needed to prevent employers and insurance companies from discriminating against people who have had genetic tests for diseases that could affect them in later life.

    “In Britain there is a general concept of ‘genetic solidarity and altruism’ among the public about genetic research,” said Baroness Kennedy, “and people who take part in research believe they are furthering scientific knowledge. But that goodwill can be strained to the limit and we need to ensure there are certain safeguards in place to protect people's personal genetic information, otherwise they might not want to take part in important

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