LUCAS Seminar Series 2023: Leah Gilman (University of Manchester)
3:00pm - 4:30pm /
Wednesday 26th April 2023
/ Venue: Lecture Theatre 1
Events will be held in-person and via Zoom - please email Alex Buchanan (alexb@liv.ac.uk) for Zoom access details Gordon Stephenson Building
- Dr Alex Buchanan
- Admission: Free to all attendees
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This event will also be accessible via Zoom, please email the organiser for access
Bypassing the Official Record: Exploring the Social and Ethical Issues Raised by Direct-to-Consumer Genetic Databases for Donor Conceived Children and their Families
Leah Gilman, University of Manchester
Companies such as Ancestry are already familiar names in the record-keeping world, enabling online access to archival records and providing income streams and sponsorship for record-keeping activities. Record-keepers may, however, be less familiar with their offshoots, such as AncestryDNA and 23AndMe, which claim to provide their customers with knowledge about themselves, including their genealogy, as ‘revealed through their DNA’, offering the promise of a ready-made family tree and bypassing archival research. Use of such direct-to-consumer genetic testing (DTCGT) has increased exponentially in the past decade.
Customers can also opt to be ‘matched’ with genetic relatives registered on the provider’s database. Presented as a way of building personal connections within their family tree, the feature also raises questions about the viability of current regulatory systems of information sharing in third party reproduction. These are typically organised through central registers and often premised on ensuring donors of reproductive material are anonymous (either permanently or temporarily) to the people and families they help to create. The rise of DTCGT means that parents through donor conception can register their child(ren) on DTCGT databases and thus search for the donor, donor siblings or other donor relatives during their child’s childhood. Older children and teenagers could also register themselves on DTCGT databases.
In this presentation, we share data produced in interviews with parents through donor conception, donor conceived people, donors and relatives of donors, who took part in the ConnecteDNA study. We explore how these different groups define and explain what is the ‘right age’ for donor conceived people to know their donor relatives and how their perceptions shape their interactions with ‘official’ registers and/or ‘unofficial’ use of DTCGT and social media to trace their child(ren)’s genetic relatives. We explore how participants’ views and behaviours are shaped by culturally-specific understandings of age and the life course and their relationship to kinship and identity, as well as concerns about data sharing and safeguarding. We argue that policymakers should pay close attention to the social and relational significance of age when planning any regulatory response to the rise of DTCGT in this context.
Bypassing the Official Record: Exploring the Social and Ethical Issues Raised by Direct-to-Consumer Genetic Databases for Donor Conceived Children and their Families
Leah Gilman, University of Manchester
Companies such as Ancestry are already familiar names in the record-keeping world, enabling online access to archival records and providing income streams and sponsorship for record-keeping activities. Record-keepers may, however, be less familiar with their offshoots, such as AncestryDNA and 23AndMe, which claim to provide their customers with knowledge about themselves, including their genealogy, as ‘revealed through their DNA’, offering the promise of a ready-made family tree and bypassing archival research. Use of such direct-to-consumer genetic testing (DTCGT) has increased exponentially in the past decade.
Customers can also opt to be ‘matched’ with genetic relatives registered on the provider’s database. Presented as a way of building personal connections within their family tree, the feature also raises questions about the viability of current regulatory systems of information sharing in third party reproduction. These are typically organised through central registers and often premised on ensuring donors of reproductive material are anonymous (either permanently or temporarily) to the people and families they help to create. The rise of DTCGT means that parents through donor conception can register their child(ren) on DTCGT databases and thus search for the donor, donor siblings or other donor relatives during their child’s childhood. Older children and teenagers could also register themselves on DTCGT databases.
In this presentation, we share data produced in interviews with parents through donor conception, donor conceived people, donors and relatives of donors, who took part in the ConnecteDNA study. We explore how these different groups define and explain what is the ‘right age’ for donor conceived people to know their donor relatives and how their perceptions shape their interactions with ‘official’ registers and/or ‘unofficial’ use of DTCGT and social media to trace their child(ren)’s genetic relatives. We explore how participants’ views and behaviours are shaped by culturally-specific understandings of age and the life course and their relationship to kinship and identity, as well as concerns about data sharing and safeguarding. We argue that policymakers should pay close attention to the social and relational significance of age when planning any regulatory response to the rise of DTCGT in this context.