Inside Information 19/7/02. By Deirdre Janson-Smith 'Inside Information: Balancing interests in the use of personal genetic information' is a major report by the Human Genetics Commission on the storage, use and protection of personal genetic information.

The report, published in 2002, was the result of a year-long consultation process that addressed serious public concerns about the use of genetic information for research, insurance and employment, and crime detection. It seeks to balance the rights of individuals for privacy with the needs of society at large, particularly where sharing personal genetic information may aid medical research.

The report makes a number of important recommendations to government to safeguard the right to personal privacy, while still enabling exciting advances in medical science.

Earlier consultations by the HGC had identified personal genetic information as a priority. The HGC defines personal genetic information widely, as 'any information about the genetic make-up of an identifiable person, where it comes from DNA testing of from any other source (including the details of a person's family history).' The Commission looked at how such information might be stored and used in clinical practice, medical research, parentage testing. insurance and employment, and forensics – especially in the national DNA database.

The report establishes basic principles of individual rights to privacy, consent, confidentiality and non-discrimination:

• everyone is entitled to genetic privacy and should not have to disclose information about their personal genetic characteristics
• private genetic information should not be obtained or held without a person's consent
• private personal genetic information should be treated as confidential and not communicated to others without a person's consent
• no one should be unfairly discriminated against on the basis of his or her genetic characteristics.

Balancing these principles, the report articulates the principle of 'genetic solidarity and altruism'. Because DNA links us all so much more than it differentiates us, we share a common interest in the results of DNA research. Knowledge from one individual can help others. As individuals, therefore, we should take society’s needs into account when making our personal choices.

The Report recommends that the government establishes new protections for individuals:

• it should be a criminal offence to test someone's DNA or access their genetic information without their knowledge or consent
• employers must not demand that an individual take a genetic test
• individuals should be protected from unfair genetic discrimination
• there should also be transparent and robust oversight arrangements to balance the interests of individuals against the interests of medical research or use of genetic information in fighting crime.

It also recommends that:

• research databases and DNA collections should be overseen by an independent ethics body
• genetic databases set up for health-related research should not be used for any other purpose - police and other similar bodies should not have access to research databases, and this should be clarified in law
• DNA databases and research should be independently overseen to ensure that advances in DNA forensic techniques keep pace with public attitudes.

The report recognises the need for continuing public dialogue and identifies a number of further reviews on different aspects, from insurance and employment discrimination to the powers of government to use and store genetic information.

Further reading

'Inside Information: Balancing interests in the use of personal genetic data'