Biobank ethics

[7] In the United States, for example, the Office for Human Research Protections often promotes a traditional system wherein data which could identify a participant is coded, and then elsewhere stored away from the data is key which could decipher the identities in special circumstances when required outside of usual research.

[10] This is because the historical methods of protecting confidentiality and anonymity have become obsolete when radically more detailed databases became available.

[8] Another problem is that even small amounts of genetic data, such as a record of 100 single nucleotide polymorphisms, can uniquely identify anyone.

[11] In response, some researchers have made efforts to describe what constitutes sufficient security and to recognize what seemingly anonymized information can be used to identify donors.

Since it is difficult to explain every issue to everyone, problems of giving informed consent arise when researchers take samples.

In a biobank system, a researcher may have many specimens collected over many years and then long after the donors gave the sample, that researcher may want to conduct a new study using those samples but have no good way to give donors information about that study and collect their consent.

[17] Most participants are willing to provide consent for biospecimens and disease specific or related biobanks are favorable.