Biobank ethics

Biobank ethics refers to the ethics pertaining to all aspects of biobanks. The issues examined in the field of biobank ethics are special cases of clinical research ethics.

The following table shows many of the leading controversial issues related to biobanking. The table names an issue, then describes a point on which there is consensus and an aspect of that same point for which there is no consensus.

There is broad consensus that when a person donates a specimen for research then that person has a right to privacy thereafter. To this end, researchers balance the need for specimens to be anonymous or de-identified from protected health information with the need to have access to data about the specimen so that researchers can use the sample without knowing the identity of the donor. 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.

Complications arise in many situations, such as when the identity of the donor is released anyway or when the researchers want to contact the donor of the sample. Donor identities could become known if the data and decipher key are unsecure, but more likely, with rich datasets the identities of donors could be determined only from a few pieces of information which were thought unrelated to disturbing anonymity before the advent of computer communication.

Among the concerns which participants in biobanks have expressed are giving personal information to researchers and having data used against them somehow.

Scientists have demonstrated that in many cases where participants' names were removed from data, the data still contained enough information to make identification of the participants possible. This is because the historical methods of protecting confidentiality and anonymity have become obsolete when radically more detailed databases became available. Another problem is that even small amounts of genetic data, such as a record of 100 single nucleotide polymorphisms, can uniquely identify anyone.

...
Wikipedia