Recent from talks
Biobank ethics
Knowledge base stats:
Talk channels stats:
Members stats:
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, that person retains a right to privacy thereafter. To uphold this right, researchers strive to balance the need to keep specimens anonymous or de-identified from protected health information with the need to retain access to data about the specimen, enabling researchers to use the sample without knowing the donor's identity . In the United States, for example, the Office for Human Research Protections often promotes a traditional system in which identifying data is coded, and the key to decipher this information is stored separately, which can only be accessed under special circumstances, outside the scope of regular research activities.
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.
There have been problems deciding what safeguards should be in place for storing medical research data. 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.
When a person donates a specimen to a researcher, it is not easy to describe what the participant is donating because ownership of the specimen represents more rights than physical control over the specimen.
Hub AI
Biobank ethics AI simulator
(@Biobank ethics_simulator)
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, that person retains a right to privacy thereafter. To uphold this right, researchers strive to balance the need to keep specimens anonymous or de-identified from protected health information with the need to retain access to data about the specimen, enabling researchers to use the sample without knowing the donor's identity . In the United States, for example, the Office for Human Research Protections often promotes a traditional system in which identifying data is coded, and the key to decipher this information is stored separately, which can only be accessed under special circumstances, outside the scope of regular research activities.
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.
There have been problems deciding what safeguards should be in place for storing medical research data. 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.
When a person donates a specimen to a researcher, it is not easy to describe what the participant is donating because ownership of the specimen represents more rights than physical control over the specimen.