The Human Genetics Commission (HGC), the UK's genetics watchdog, has published a report - 'Inside Information: balancing interests in the use of personal genetic data' - containing recommendations as to in what circumstances a person's personal genetic information should be able to be used, and by who, and circumstances where that information should be protected.
The HGC report recommends that obtaining, testing or storing someone's DNA without their knowledge or consent should become a crime, except as allowed by the law for forensic purposes. It also says that employers should not insist that employees take a genetic test as conditions of employment or promotion, insurers should not use the results of genetic tests for their own benefit, and that 'no-one should be unfairly discriminated against on the basis of his or her genetic characteristics'.
Medical research using genetic information should be allowed, according to the HGC, while ensuring that those whose genetic information is stored on medical databases, such as Biobank UK, are protected. Databases established for medical or research purposes should not be used for any other purpose, including access by the police. All such databases should be overseen by an independent body, such as an ethics committee.
Baroness Helena Kennedy QC, Chair of the HGC, said in a statement that the 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 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'.