The Human Genetics Commission’s major piece of work on the use and protection of personal genetic information has culminated in the publication of its report "Inside information: balancing interests in the use of personal genetic data". The "balance" referred to in the title is spelled out in the two overarching principles underlying the report: the principles of genetic solidarity and altruism, and respect for persons. The report makes recommendations on the use of genetic information in clinical practice and medical research, and for non-clinical purposes such as insurance, employment, forensic databases and family relationship testing. Genetic information is defined broadly as "information about the genetic make-up of an identifiable person, whether derived directly from DNA (or other biochemical) testing methods or indirectly from any other source". In every case, the report concentrates on the need to achieve an optimum balance between the right and wish of people to keep their genetic information private, and their obligations to other family members and to society as a whole to share that information under some circumstances. In the clinical setting, for example, the Commission believes that the use of family history and other genetic information may be an important part of a patient’s care, and that a clinician should be able to elicit and use this information without the need to inform or seek the consent of the patient’s genetic relatives. It suggests that secondary legislation may be needed to give this recommendation legal standing.
In the area of genetic research and large genetic databases such as BioBank UK, the Commission suggests the establishment of independent oversight bodies for all such databases and recommends that databases established for medical research should not be accessible for other purposes such as forensic uses. The report stresses the importance of the informed consent of volunteers participating in this type of genetic research. It considers that one-off consent should be sufficient if identifiers are encrypted and recommends that the Government support research into robust methods for encryption for use in situations, such as this, where the encryption needs to be reversible.
Substantial sections of the report deal with the potential for unfair discrimination on the basis of a person’s genetic make-up. In the area of insurance, a five-year moratorium on the use of genetic information is currently in place. The Commission recommends that the moratorium period be used to improve the evidence base for the use of family history information by insurance companies and to explore ways of enabling those with a genetic condition to obtain access to affordable insurance products. There is currently no evidence of misuse of genetic information in the employment setting but the Commission plans to keep a watching brief on this area.
Several recommendations are made for changes in the way forensic DNA databases are assembled, maintained and used. For example, the report recommends that an independent body should be established to oversee the police’s National DNA Database, in particular with regard to the retention of the original samples and the use of the database for research into new DNA-based techniques in crime detection.
Finally, the HGC expresses concern at the lack of regulation of DNA-based parentage testing. It recommends that there should be "clear official guidelines for the use of DNA testing for child support and immigration control purposes". It also recommends that it should be made a criminal offence to obtain or analyse personal genetic information without consent, for non-medical purposes such as parentage testing.