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DTC genetic testing and the role of science museums in building ethical and legal awareness

Marta Tomasi

Articolo di Lucia Martinelli e Marta Tomasi,pubblicato in Revista de Derecho y Genoma Humano. Genética, Biotecnología y Medicina Avanzada/Law and the Human Genome Review. Genetics, Biotechnology and Advanced Medicine, No. 49 July-December 2018, pp. 325-337.

The study of the human genome has led to new and important applications, giving rise to hopes and controversies regarding its scientific, social, ethical and legal implications. Personal genotyping is now available to anyone, and a variety of online direct-to-consumer (DTC) genetic tests are offered at accessible prices, as genetic tests have become a consumer item. Such knowledge is not always beneficial, having every genetic test an impact: awareness of disease predisposition, kinship confirmation or acquiring one’s own genetic profile is not neutral knowledge. In some jurisdictions, care must be taken regarding the processing of sensitive information and medical consultation is required due to the difficulties of interpreting health-related genetic data. In the logic of Internet as a free market, on the contrary, regulations may be bypassed since companies can be based in jurisdictions characterized by different rules. Therefore, information and awareness are crucial to make citizens’ rights effective. Nonetheless, demand is increasing and DNA sequencing companies are competing to offer affordable costs. A growing flow of genuine disinformation prevents a profitable public debate. There is need, therefore, for a commitment to build a common culture of biological knowledge that can allow informed choices to be made and protect citizens’ rights. This is yet the mission of modern science museums, which are acting as key meeting points of dialogue and public interaction with science and society related aspects, paying attention to ethical and social topics of current issues. In this framework, MUSE, the science museum of Trento (IT), realized the temporary exhibit “The Human Genome. What makes us unique”, which aims at stimulating visitors to reflect about crucial questions arisen from genomics applications rather than providing notions to passively fed visitors. Thus, scientific information is always embedded with ethical and legal issues. As an example, we present “The genetic test supermarket” exhibit, where four common DTC tests (disease predisposition; paternity testing; ancestry; soul mate finding) are virtually offered. Here, an interactive questionnaire has been ad hoc designed to let visitors reflect on some crucial questions: who can interpret the genetic information? Who controls it use? Will this knowledge make us excessively anxious? How can we prevent social and work-related discrimination against people with some genetic predisposition?

Acknowledgements: Authors wish to thank Architect Lorenzo Greppi for exhibition, graphic design and video supervision, and Michele Lanzinger, the Director of MUSE, for useful discussion.

Altri autori

Lucia Martinelli

Pubblicato il: Giovedì, 07 Marzo 2019 - Ultima modifica: Lunedì, 01 Luglio 2019
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