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Genetic Testing Must Not Trade Away Privacy

OTTAWA, May 20, 1992--Canadians must be able to benefit from the enormous promise of genetic testing without trading away their intimate secrets, says Privacy Commissioner Bruce Phillips in a report released today.

Unregulated genetic testing raises the spectre of eugenics--engineering human life. Less dramatic but more immediate is the threat that testing by employers and insurance companies will reduce our existence to a human bar code, creating an underclass of the unemployable, underemployed and uninsurable.

The 111-page report, "Genetic Testing and Privacy", urges government to adopt much more specific legal protection for our genetic information because the federal Privacy Act is simply not up to the job.

The Charter, medical confidentiality laws and ethics offer some protection but "existing laws will not prevent realizing our worst fears about privacy abuses through genetic testing", said Phillips. He also urges scientists, educators, the media, unions and religious organizations to bring the debate out of the laboratories.

Individuals must be able to control disclosure of their genetic information to government, the private sector and even to themselves, if they so choose.

The report includes a greatly simplified description of genetic testing. It sets out broad privacy principles for testing, examines how the Privacy Act regulates federal government testing and the need to regulate the private sector. Finally, it summarizes international testing and protections.

Among the report's 22 recommendations are:

  • a federal government study of the extent of genetic testing by both government and private sectors;
  • prohibiting mandatory genetic testing by the state and the private sector except in criminal investigations;;
  • generally prohibiting employers from collecting genetic information about employees (unless employees consent for a specific purpose--for example, to monitor the effects of environmental hazards);
  • prohibiting mandatory genetic testing to determine eligibility for benefits and services;
  • prohibiting genetic databases of the general population for crime control;
  • whenever possible, requiring researchers to rely on genetic samples that cannot be linked to a known individual.

A backgrounder is attached and a summary of all recommendations appears on page 86 of the report.

Information: Sally Jackson (613) 995-8566, 1(800) 267-0441

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