The Human Genetics Commission (HGC) today publishes a major report into the storage and protection of personal genetic information. The report, “Inside information – balancing interests in the use of personal genetic data”, has recommendations to the Government aimed at improving public trust while enabling advances in medical science. The recommended measures include:
– Making it a criminal offence to test someone’s DNA or access their genetic information without their knowledge or consent for non-medical purposes, except as allowed by law -forensic uses.
– Barring employers from demanding that an individual take a genetic test as a condition of employment or employment benefits. The Commission will also monitor any proposals for voluntary use.
– Measures should be introduced to protect individuals from unfair genetic discrimination.
– The governance of research databases and DNA collections should allow for oversight by an independent body – whether it is an ethics committee or another body – which is separate from the owners and users of the database.
– Genetic databases established for health related research purposes should not be used for any other purpose. Police and other similar bodies should not have access to genetic research databases and this should be clarified in law.
– There should be some form of independent oversight arrangements for forensic DNA databases and research, in part to ensure that advances in DNA forensic techniques keep pace with public attitudes.
The recommendations, a result of a year’s consultation involving the public, organisations and the HGC’s recently formed consultative panel, aim to uphold the principle that everyone should have their rights and dignity respected, regardless of their genetic characteristics. This implies that:
– 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; and no one should be unfairly discriminated against on the basis of his or her genetic characteristics.
Commenting on the report Baroness Helena Kennedy QC, Chair of the Human Genetics Commission said: “Our report is about balancing interests in the use of personal genetic data. We must ensure that there are proper safeguards in place to protect individuals from any abuse in obtaining and storing genetic information, at the same time we must not miss out on the major benefits for all of us that medical research using genetic information can bring”.
