eprintid: 1450705
rev_number: 29
eprint_status: archive
userid: 608
dir: disk0/01/45/07/05
datestamp: 2014-10-07 21:07:04
lastmod: 2020-02-12 17:28:37
status_changed: 2018-03-08 17:10:01
type: proceedings_section
metadata_visibility: show
item_issues_count: 0
creators_name: De Cristofaro, E
title: An Exploratory Ethnographic Study of Issues and Concerns with Whole Genome Sequencing
ispublished: pub
divisions: UCL
divisions: A01
divisions: B04
divisions: C05
divisions: F48
note: This is the published version of record. For information on re-use, please refer to the publisher’s terms and conditions.
abstract: Progress in Whole Genome Sequencing (WGS) will
soon allow a large number of individuals to have their genome
fully sequenced. This lays the foundations to improve modern
healthcare, enabling a new era of personalized medicine where
diagnosis and treatment is tailored to the patient’s genetic
makeup. It also allows individuals motivated by personal curiosity
to have access to their genetic information, and use it, e.g., to trace
their ancestry. However, the very same progress also amplifies
a number of ethical and privacy concerns, that stem from the
unprecedented sensitivity of genomic information and that are
not well studied.
This paper presents an exploratory ethnographic study of
users’ perception of privacy and ethical issues with WGS, as well
as their attitude toward different WGS programs. We report on
a series of semi-structured interviews, involving 16 participants,
and analyze the results both quantitatively and qualitatively. Our
analysis shows that users exhibit common trust concerns and fear
of discrimination, and demand to retain strict control over their
genetic information. Finally, we highlight the need for further
research in the area and follow-up studies that build on our
initial findings.
date: 2014-04-27
date_type: published
publisher: Internet Society
official_url: https://www.ndss-symposium.org/ndss2014/workshop-usable-security-usec-2014-programme/
vfaculties: VENG
oa_status: green
full_text_type: pub
language: eng
primo: open
primo_central: open_green
verified: verified_manual
elements_source: Manually entered
elements_id: 983168
doi: 10.14722/usec.2014.23020
lyricists_name: De Cristofaro, Emiliano
lyricists_id: EDECR21
actors_name: Majekodunmi, Adedeji
actors_name: Flynn, Bernadette
actors_id: AMAJE83
actors_id: BFFLY94
actors_role: owner
actors_role: impersonator
full_text_status: public
series: NDSS Workshop on Usable Security
publication: Proceedings of the 8th NDSS Workshop on Usable Security (USEC 2014)
volume: 8
event_title: 8th NDSS Workshop on Usable Security (USEC 2014), 23 February 2014, San Diego, California, USA
event_location: San Diego, CA, USA
event_dates: 23 February 2014 - 23 February 2014
institution: 8th NDSS Workshop on Usable Security (USEC 2014)
isbn: 1891562371
editors_name: Wagner, D
editors_name: Smith, M
citation:        De Cristofaro, E;      (2014)    An Exploratory Ethnographic Study of Issues and Concerns with Whole Genome Sequencing.                     In: Wagner, D and Smith, M, (eds.)  (Proceedings) 8th NDSS Workshop on Usable Security (USEC 2014), 23 February 2014, San Diego, California, USA.   Internet Society       Green open access   
 
document_url: https://discovery.ucl.ac.uk/id/eprint/1450705/1/De-Cristafaro_Exploratory_Ethnographic_Study_VoR.pdf