Informed consent 'is desired' for inclusion in science software databases

Individuals who may be included in databases of anonymous genetic information used in science software applications desire informed consent if such usage is beyond what they initially agreed to, research has found.

Studies conducted jointly by the University of Washington and Group Health Research Institute queried 365 participants in the institute's Adult Changes in Thought (ACT) programme.

When asked if their medical and genetic records could be added anonymously to a database used in federal science software, 86 per cent said yes.

However, significant proportions objected to being included in the system in a way that did not include specifically asking for new consent.

More than two-thirds (70 per cent) would not wish their anonymised data to be added if they were not told, while 67 per cent objected to being notified after the event.

In all, 90 per cent of those surveyed said that "reconsent" - asking for fresh permission to extend the original usage of the information collected - was important.

The ACT research programme commenced in 1994 and focuses on cognitive change in the over-65s, with particular respect to conditions such as Alzheimer's disease.