Tier 1 Interpersonal level
Large scale collections of biological samples and data, along with information such as the individual’s health or lifestyle, have become invaluable tools for research on a wide range of diseases. In the past, ethicists have voiced concerns about the potential for privacy violations, and emphasised the need for participants to be re-contacted to obtain consent for new research projects involving their sample or data. The report takes a new approach to organising people’s participation in biobank-based research, suggesting that ‘participation agreements’ should replace traditional consenting procedures.
“In the spirit of solidarity, we believe that it is acceptable to ask participants to agree to their sample being used in any future research that is within the broad aims of the biobank and has been approved by a research ethics committee. The risks to the participant are very low yet it would save valuable time and resources for the biobank,” says Professor Prainsack, one of the two authors of the report.