DNA Databases, aka Biobanks.

There are two main types of Biobanks in this world. One that is Direct-to-customer (DTC) and another for scientific development. It can also be said that the DTC Biobanks may be using the genetic DNA to aid scientific research, however their main purpose is to provide customers information about their DNA (family history, origins, risks of developing a disease, etc.). This service is commercially-driven and is there to inform its customers more about themselves. Ironically, this is not a formal diagnosis and cannot be used to obtain certain drugs – regardless of the hefty $99 dollar price tags. The latter category of biobanks aims to study and decode the human genome, which will allow scientists to study coding and non-coding regions of DNA, which will provide vital information for diseases.

In general, biobanks are just like any other database that stores large quantities of genetic DNA: they face issues such as security, integrity, Privacy, Anonymity, Policies and Standards, and possibly Surveillance. These databases have also proved to be beneficial to the general public, by allowing the police to convict wanted criminals as their data (or someone related to them) has stored genetic data on their database, allowing the police to track down this wanted criminal. Even crimes committed as far back as 20 years ago can be traced!

Security: Having Levels of access, locks and backups and audit trails, this should make databases (especially ones with sensitive data) more secure and less susceptible to hackers.

Privacy: What will companies do with your data after they receive it? (Potential of Data Mining)

Majority of DNA storing companies will agree to let them share DNA with researcher parties. Therefore consent is a huge issue and trust. 23andMe upkeep their promise to not misuse DNA. However it is clear that even these policies can be broken when dealing with money. 23andMe have a deal with GSK and 6 other biotechnology and pharmaceutical companies – allowing them to access 23andMe’s Database. This concerns the public as they would have signed a consent form to allow 23andMe to have their DNA used or not. Unfortunately, the customers do not have agency over their own DNA.

Sensitive genetic information can be obtained from DNA samples, such as family relationships or an unexpected result from the DNA sex test. The fact that the police, forensic science services and people carrying out research on the Database have access to people’s DNA without their consent could be seen as an intrusion of personal privacy.

Privacy concerns –  not growing internationally (DNA database). Different databases have different policies so control of DNA is becoming more of an issue.

Ethics:

Laws concerning genetic privacy not broad enough. Only law covering genetic privacy is the Genetic Information Non-discrimination act (GINA). Internal policies may conflict with GINA.

Law enforcement knows these companies have DNA, and they may want it, already using to convict criminals. Subpoena makes this possible.

In 2008, a 14-year old girl was arrested, and her DNA taken (saliva swab), yet after being released without charge, the police denied to remove her DNA data from their database – this caused conflict.

Anonymity: Specific personal information that goes along with their DNA can be used to identify someone (Data Matching)

Data Integrity:

500,000 DNA database mistakes in 2007 (national database), falsely recorded names.

Main sources of error: People giving someone else’s name, or people who do not exist. Spelling errors and other inaccuracies.

Consequences: Innocent are charged with wrongful offences. Too great a percentage of children and ethnic minorities. However ministers say that the DNA database help to solve crimes.

Tech company could be bought, sold, go out of business, what happens to DNA then?

Criminal Investigation:

DNA Databases reduces crime and it has been proven that it will become more effective when the DNA database expands.

Destroying biological sample – destroying policy? There is an opt-in and opt-out policy, however Digital DNA could still be stored? This is absolutely crucial for crimes, and apparently the FBI can retrieve information when they send an order.

This of course does not mean that the innocent should have their DNA removed…what if they become a criminal?

I do agree that there should be a controlled use of familial searching and to only use it for most serious crimes.

In the end – who will be able to control where all this genetic data goes? DNA will eventually become digital…

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