Abstract
The determination of the genetic status of an individual has been of some concern for many years, not least because genetic data may provide a range of different informational streams beyond the nature of the health status of the individual. Such genetic data has both public and private interests: public in that genetic data may provide information on the health status of a population and private because genetic data may provide commercial potential, both in health and life style products. The control of genetic data, therefore, has a range of potentialities, and such potentialities may have significant implications for the individuals who supply the genetic data. With the coming of the Data Protection Regulation 2016, can we say that there is a genetic status to an individual which provides both rights and duties for that individual?
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Notes
- 1.
The nature of research and medical application using these databases cannot be defined by a country’s nationals; their application is and must be international. Diseases, for example, are rarely confined by geographical borders. Many international organizations have stated the need for an international approach, we cannot rely therefore on national laws to govern these databases particularly when we consider the conflict between an individual’s informational privacy and the disclosure which may be necessary for the public health of nation States.
- 2.
The intention of these guidelines was to harmonize national privacy legislation and provide a framework for facilitating international flows of data.
- 3.
Other Guidelines have sought harmonization on security systems and cryptography policies.
- 4.
Article 14 of the Universal Declaration on Human Genetic Data requires States should endeavour to protect the privacy of individuals and the confidentiality of human genetic data linked to an identifiable person, a family or, when appropriate, a group, in accordance with domestic law consistent with the international law of human rights.
- 5.
Richards (2006) notes ‘Privacy is a particularly troubling term to use in the database context. On the one hand, virtually all scholars agree that privacy is a concept that has eluded definition, on the other hand, privacy has come to be associated with a wide variety of meanings in addition to control over personal data, including residential solitude, rights to self-definition, freedom from government surveillance, and fundamental rights to make autonomous decisions about one’s body’.
- 6.
The Council of Europe Treaty (Treaty 180) Convention for the Protection of Individuals with Regards to the Automatic Processing of Personal Data, Article 12 states, a party shall not for the sole purpose of the protection of privacy, prohibit or subject to special authorization, transborder data flows of personal data to the territory of another party. Article 18 of the Universal Declaration on Human Genetic Data requires ‘States should regulate, in accordance with their domestic law and international agreements, the cross-border flows of human genetic data, human proteomic data and biological samples so as to foster international medical and scientific cooperation and ensure fair access to this data.’
- 7.
The nature of children, however, is different and requires the consent of a parent or custodian, Article 4 & 7 regulation 2016/679.
- 8.
The notion of informed consent is given at Article 5 in that the person shall beforehand be given appropriate information as to the purpose and nature of the intervention, as well as, on its consequences.
- 9.
This should include: Principles—how the patient would be treated in respect of the information they provided, reasons for the research; Norms—standards of behaviour defined in terms of rights and obligations; Rules—specific prescriptions and proscriptions, what could be done with patients’ genetic data, and their sample would be anonymized, how could the DNA be linked to the patient if needed, and Decision-Making Processes—practice for making and implementing collective choice, who would be able to gain access to the data.
- 10.
This is derived from the Universal Declaration on the Human Genome and Human Rights at Article 5 ‘research, treatment or diagnosis affecting an individual’s genome shall be undertaken only after rigorous and prior assessment of the potential risks and benefits pertaining thereto and in accordance with any other requirement of national law…Research which does not have an expected direct health benefit may only be undertaken by way of exception, with the utmost restraint, exposing the person only to a minimal risk and minimal burden and if the research is intended to contribute to the health benefit of other persons in the same age category or with the same genetic condition, subject to the conditions prescribed by law, and provided such research is compatible with the protection of the individual’s human rights’.
- 11.
Article 1.
- 12.
Article 2.
- 13.
Article 3.
- 14.
Article 4.
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Richards, N. M. (2006). The information privacy law project. Georgetown Law Journal, 94, 1087–1140.
Schwartz, P. (1999). Privacy and democracy in cyberspace. Vanderbilt Law Review, 52, 1609–1702.
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Christ, H. (2019). Individual Genetic Status. In: Bartolini, A., Cippitani, R., Colcelli, V. (eds) Dictionary of Statuses within EU Law. Springer, Cham. https://doi.org/10.1007/978-3-030-00554-2_40
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