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Genealogische DNA-databanken: consequenties van het delen van ons DNA

Tijdschrift Justitiële verkenningen, Aflevering 1 2021
Trefwoorden direct-to-consumer (DTC) genetic testing, spreading of DNA data, risks, function creep, ownership of DNA
Auteurs Nico Kaptein
SamenvattingAuteursinformatie

    This article aims to contribute to the public debate on the consequences and risks of the spreading of DNA data related to direct-to-consumer (DTC) genetic testing. Market developments drive DTC companies to find new business models. As a result of mergers and acquisitions and of the developments of new products and services, DNA data are often used differently than what they were originally collected for. Since DTC DNA data are not protected as well as health-related data generally are, it is hard to keep track of these data. This is partly due to legal and ethical issues such as unclarity of who owns DNA and problems with informed consent. Risks are identified with regards to privacy, information security, the right not to know, (un)equal opportunities, and national security. The author calls for an investment in knowledge and awareness in order to allow for a fair balance between opportunity and risk of DTC DNA products and services.


Nico Kaptein
Drs. N. Kaptein is directeur van advies- en onderzoeksbureau Maruda.
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