Attitudes towards Social Networking and Sharing Behaviors among Consumers of Direct-to-Consumer Personal Genomics

Abstract

Little is known about how consumers of direct-to-consumer personal genetic services share personal genetic risk information. In an age of ubiquitous online networking and rapid development of social networking tools, understanding how consumers share personal genetic risk assessments is critical in the development of appropriate and effective policies. This exploratory study investigates how consumers share personal genetic information and attitudes towards social networking behaviors. Methods: Adult participants aged 23 to 72 years old who purchased direct-to-consumer genetic testing from a personal genomics company were administered a web-based survey regarding their sharing activities and social networking behaviors related to their personal genetic test results. Results: 80 participants completed the survey; of those, 45% shared results on Facebook and 50.9% reported meeting or reconnecting with more than 10 other individuals through the sharing of their personal genetic information. For help interpreting test results, 70.4% turned to Internet websites and online sources, compared to 22.7% who consulted their healthcare providers. Amongst participants, 51.8% reported that they believe the privacy of their personal genetic information would be breached in the future. Conclusion: Consumers actively utilize online social networking tools to help them share and interpret their personal genetic information. These findings suggest a need for careful consideration of policy recommendations in light of the current ambiguity of regulation and oversight of consumer initiated sharing activities.

Behavioural changes, sharing behaviour and psychological responses after receiving direct-to-consumer genetic test results: a systematic review and meta-analysis

“…The characteristics of the 19 articles, involving 11 unique studies (see Table 1 , column 9 for details), included in the systematic review can be found in Table 1 . Six studies had a cross-sectional design (Egglestone et al 2013 ; Gordon et al 2012 ; Kaufman et al 2012 ; Lee et al 2013 ; McGrath et al 2016 ; McGuire et al 2009 ), three were longitudinal observational studies (Bloss et al 2011b , 2013 ; Boeldt et al 2015 ; Carere et al 2016 ; Darst et al 2013 , 2014 ; Kaphingst et al 2012 ; O’Neill et al 2015 ; Reid et al 2012 ; van der Wouden et al 2016 ) and two were intervention studies (Haga et al 2014 ; James et al 2011 ). The number of participants ranged from 60 to 2037, totalling 6672 unique participants.…”

“…The number of participants ranged from 60 to 2037, totalling 6672 unique participants. Six unique study populations (Carere et al 2016 ; Egglestone et al 2013 ; Kaufman et al 2012 ; Lee et al 2013 ; McGrath et al 2016 ; McGuire et al 2009 ; van der Wouden et al 2016 ) involved actual consumers who paid the full or a reduced retail price for the product. The remaining five studies (Bloss et al 2011b , 2013 ; Boeldt et al 2015 ; Darst et al 2013 , 2014 ; Gordon et al 2012 ; Haga et al 2014 ; James et al 2011 ; Kaphingst et al 2012 ; Reid et al 2012 ) included participants who were offered genetic testing for free as part of a research trial (henceforth referred to as non-actual consumers).…”

“…In general, the studies involved mostly Caucasian individuals with relatively higher education and income levels. Six studies did not alter the standard procedures of the genetic testing companies and offered no additional counselling as part of the study (Carere et al 2016 ; Egglestone et al 2013 ; Kaufman et al 2012 ; Lee et al 2013 ; McGrath et al 2016 ; McGuire et al 2009 ; Olfson et al 2016 ; van der Wouden et al 2016 ). Specific details of what the standard procedures entailed were not clearly provided but were likely to have included an online report with online educational materials.…”

Challenges of web-based personal genomic data sharing

“…Ethical and legal dilemmas faced by researcher-driven or biobank-driven genomic data sharing have been extensively discussed in the literature (Fullerton et al 2010 ; Harris et al 2012 ; Kaye et al 2009 ; Knoppers et al 2011 ). A few studies also have reflected on attitudes of consumers concerning sharing personal genomic data (Lee et al 2013 ) and policies employed by direct-to-consumer genetic testing companies regarding their research activities fueled by consumer data (Esposito and Goodman 2009 ; Harris et al 2013 ; Howard et al 2010 ). However, little has been published about the ethical and legal challenges surrounding growing web-based personal genomic data sharing (Bloss 2013 ; Angrist 2014 ; Mathews and Jamal 2014 ).…”

“…However, a likely shortage of knowledge and experience of general health care professionals in genetics may hinder such consultation. In this regard, a survey of consumers of Direct-to-Consumer personal genomics indicated “the majority of participants reported that their healthcare provider had limited ability to understand and insufficient expertise to interpret their results” (Lee et al 2013 ).…”