There was a lecture held at NTU with Professor Sir Alec Jeffreys discussing the groundbreaking technique of DNA fingerprinting and beyond."DNA fingerprinting, accidentally invented in 1984, has revolutionised many areas of biology, most notably in forensic and legal medicine. Professor Jeffrey’s lecture will describe how DNA typing can be used to solve casework and will review the latest developments, including the creation of major national DNA databases that are already proving extraordinarily effective in the fight against crime. It will also discuss how this work has led to the discovery of some of the most unstable regions of human DNA, and how these can be used to study human evolution in real time and to explore the effects of environmental exposure to agents such as radiation on heritable mutations in human DNA."
We expect the a video version to be available at some point. What was interesting, when listening to his lecture was the moral and ethical dilemmas about genetic information, not simply what the DNA can reveal about individuals, but also the genetic profiles of their relatives. The subject of genetic information and privacy implications is well documented here and here. Jeffreys also touched on the subject of DNA databases. What was disconcerting was that even a minor parking offence would mean that your DNA would be taken - sounds like huge implications for privacy here.
Revisiting the Art. 29 Working Party's guidelines on genetic data, it is vitally important that the privacy of individual's DNA and what he/she is genetically pre-disposed to (whether he/she is party to the information is another matter) is preserved. Here is short extract from their concluding remarks:
"Any use of genetic data for purposes other than directly safeguarding the data subject's health and pursuing scientific research should require national rules to be implemented, in accordance with the data protection principles provided for in the Directive, and in particular the finality and proportionality principles. The application of these principles render the blanket implementation of mass genetic screening unlawful.
Furthermore, in accordance with these principles, the processing of genetic data should be authorised in the employment and insurance fields only in very exceptional cases provided for by law, so as to protect individuals from being discriminated against on the basis of their genetic profile.
In addition, the ease with which genetic material can be obtained unbeknownst to the data subject and the relevant information can be susbsequently extracted from such material, requires strict regulations in order to prevent the dangers related to new forms of "identity theft" – which would be especially dangerous in this sector and might affect fatherhood and motherhood, or even the possibility of using the material for cloning puposes. This is why, in regulating genetic data, one should not fail to consider the legal status of the DNA samples used for obtaining the information at stake. Among the issues addressed, special importance should be attached to the application of a wide range of data subjects' rights to the management of such samples, as well as to destruction and/or anonymisation of the samples after obtaining the required information.
Finally, procedures should be put in place in order to ensure that genetic data are only processed under the supervision of qualified professionals who are entitled to such processing on the basis of specific authorisations and rules.
• In Member States where the purposes and the appropriate safeguards for the processing of genetic data are not established by law, the DPAs are encouraged to play an even more active role in ensuring that the finality and proportionality principles of the Directive are fully respected.
In this respect, the Working Party recommends that Member States should consider submitting the processing of genetic data to prior checking by DPAs, in accordance with Article 20 of the Directive. This should in particular be the case with regard to the setting up and use of bio banks."
See also (not exhaustive):
Furthermore, in accordance with these principles, the processing of genetic data should be authorised in the employment and insurance fields only in very exceptional cases provided for by law, so as to protect individuals from being discriminated against on the basis of their genetic profile.
In addition, the ease with which genetic material can be obtained unbeknownst to the data subject and the relevant information can be susbsequently extracted from such material, requires strict regulations in order to prevent the dangers related to new forms of "identity theft" – which would be especially dangerous in this sector and might affect fatherhood and motherhood, or even the possibility of using the material for cloning puposes. This is why, in regulating genetic data, one should not fail to consider the legal status of the DNA samples used for obtaining the information at stake. Among the issues addressed, special importance should be attached to the application of a wide range of data subjects' rights to the management of such samples, as well as to destruction and/or anonymisation of the samples after obtaining the required information.
Finally, procedures should be put in place in order to ensure that genetic data are only processed under the supervision of qualified professionals who are entitled to such processing on the basis of specific authorisations and rules.
• In Member States where the purposes and the appropriate safeguards for the processing of genetic data are not established by law, the DPAs are encouraged to play an even more active role in ensuring that the finality and proportionality principles of the Directive are fully respected.
In this respect, the Working Party recommends that Member States should consider submitting the processing of genetic data to prior checking by DPAs, in accordance with Article 20 of the Directive. This should in particular be the case with regard to the setting up and use of bio banks."
See also (not exhaustive):
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