Biogenetic technologies and social transformations in kinship and relatedness in Iceland?

This research investigates how biobanking and genetic testing modify ideas of the family in Icelandic society. With the means to develop societal knowledge of disease and genomics in the Icelandic population, the national biobank deCODE can discriminate which kind of foetuses deserve a birth and integration into Icelandic society.
In 2006 all Icelandic women were offered 'the combination test' - a prenatal screening technology that detects with 95% accuracy genetic abnormalities such as Down Syndrome - and has since seen the non-invasive prenatal test (NIPT) become a more efficient practise with a near 100% accuracy rate (see Halle and Fjose 2006). In 2013, deCODE collaborated with students to create the 'Islendiga App' (App of Icelanders); a dating app allowing people to see how closely they are related using an online genealogical database stretching back over 1200 years (see The Associated Press 2013). Thus, the impacts of genetic testing for Icelandic society has clearly affected the ideas of the self and family during multiple stages of the life course; an immense scenario where abortion and eugenics interlink to instil a belief in the molecular value of Icelandic culture.
This is increasingly confusing considering that Iceland is often venerated for its egalitarian structure and welfare ideology, including various political groups such as The People's Party; The Social Democratic Alliance; and the Left-Green Movement who are sympathetic to the values of feminism and disability rights. The politics of biobanking and the availability of genetic practices in Iceland is a lens into societal discourses of identity and relatedness underpinned by a morality of disability. Following Carsten's (2014) idea of the proximity of kinship to science and technology, this research foregrounds a critical approach of how deCODE and wider society participate to shape particular ideologies of Icelandic culture, disability, and the family.
Sociologically, implications of genetic screening and engineering has been carefully opened up with Margaret Sleeboom-Faulkner's concept of 'life assemblages' (see Sleeboom-Faulkner 2010, 2014), in a bid to question the relationship between science, technology and society. However, references to Iceland's relationships have either fixated on the history of biotechnology (see Árnason and Simpson 2003); the dynamics of gender and parental responsibility for prospective parents receiving prenatal care (see Gottfredsdóttir 2009a, 2009b); or the political debates of deCODE and property rights to biological material (see Pálsson 1999, 2002, 2011). While Gisli Palssons' insights into the political relationships of deCODE and Icelandic society are extremely useful in this regard, this research builds upon his ideas as a link to a societal question about how Icelander's can form cultural ideas of the family at a cost of harrowing a discourse of eugenics and disability. In so doing, this research revises the ideas of those with a monopoly on Icelandic ethnography with a contemporary focus on family making in Iceland with its alarming costs for a narrowing population of disabled people.
The University of Sussex is a perfect institutional fit with this project: Margaret Sleeboom-Faulkner's specialisms of genomics and prenatal testing in Asia (Sleeboom-Faulkner: 2009, 2010, 2014, 2018) and Karis Petty's (2014) ideas on the ways that peoples with impaired vision experience their environment take seriously the issues of how physical and social objects obstruct and reinvigorate people's abilities to form social relations. Furthermore, the 'Centre for Cultures of Reproduction, Technologies and Health' [CORTH] shares a concern of reproductive health that is essential to this project's objective (see: http://www.sussex.ac.uk/corth/). CORTH holds an impressive record for producing truly innovate and interdisciplinary research, and this project offers to complement its achievements to the field as a whole.