Assessing optimism and pessimism about genomic medicine: Development of a genomic orientation scale

Abstract

Efforts to characterize stakeholder attitudes about the implementation of genomic medicine would benefit from a validated instrument for measuring public views of the potential benefits and harms of genomic technologies, which would facilitate comparison across populations and clinical settings. We sought to develop a scale to evaluate attitudes about the future of genomic medicine. We developed a 21‐item scale that examined the likelihood of various outcomes of genomic medicine. The scale was administered to participants in a genomic sequencing study. Exploratory factor analysis was conducted and bivariate correlations were calculated. The genomic orientation (GO) scale was completed by 2895 participants. A two‐factor structure was identified, corresponding to an optimism subscale (16 items, α = 0.89) and a pessimism subscale (5 items, α = 0.63). Genomic optimism was positively associated with a perceived value of genetic test results, higher health literacy, and decreased decisional conflict about participation in a genomic research study. Genomic pessimism was associated with concerns about genetic testing, lower health literacy, and increased decisional conflict about the decision to participate in the study. The GO scale is a promising tool for measuring both positive and negative views regarding the future of genomic medicine and deserves further validation.

Citizens' Attitudes, Knowledge, and Educational Needs in the Field of Omics Sciences: A Systematic Literature Review

“…However, some concerns were expressed, mostly related to the consequences of DNA-testing for taking out insurances. Eventually, just a small number of included studies (10%, n = 4) proved a medium-high or high knowledge level (Waters et al, 2014(Waters et al, , 2016Schmidlen et al, 2016;Horrow et al, 2019). Several studies included in our review reported a correlation between citizens' level of knowledge and some of their socio-demographic characteristics.…”

“…Main tools used to investigate citizens' attitudes, knowledge, and educational needs were questionnaires or surveys (Henneman et al, 2006(Henneman et al, , 2013Calsbeek et al, 2007;Goddard et al, 2007Goddard et al, , 2009Morren et al, 2007;Ishiyama et al, 2008;Makeeva et al, 2009;Molster et al, 2009;Stewart-Knox et al, 2009;Sturgis et al, 2010;Mai et al, 2011;Smerecnik et al, 2011;Dijkstra et al, 2012;East et al, 2012;Kaphingst et al, 2012Kaphingst et al, , 2015Kaphingst et al, , 2016Kolor et al, 2012;Nielsen and El-Sohemy, 2012;Haga et al, 2013;Almeling, 2014;Borzekowski et al, 2014;Vermeulen et al, 2014;Waters et al, 2014Waters et al, , 2016Abrams et al, 2015;Dodson et al, 2015;Etchegary et al, 2015;Graves et al, 2015;Mavroidopoulou et al, 2015;Mählmann et al, 2016;Miyamoto et al, 2016;Schmidlen et al, 2016;Simonstein and Mashiach-Eizenberg, 2016;Krakow et al, 2017;Horrow et al, 2019;Jones et al, 2019;Pereira et al, 2019;…”

“…The articles included in this systematic review were published between 2006 and 2020. Among the 54 included studies, 44% were conducted in USA (n = 24) (Fomous et al, 2006;Goddard et al, 2007Goddard et al, , 2009Gleason et al, 2010;Hahn et al, 2010;Lemke et al, 2010;East et al, 2012;Kaphingst et al, 2012Kaphingst et al, , 2015Kaphingst et al, , 2016Kolor et al, 2012;Haga et al, 2013;Almeling, 2014;Borzekowski et al, 2014;Waters et al, 2014Waters et al, , 2016Waters et al, , 2017Abrams et al, 2015;Dodson et al, 2015;Graves et al, 2015;Schmidlen et al, 2016;Ahmed et al, 2017;Krakow et al, 2017;Horrow et al, 2019), 22% (n = 12) in the European Union (EU27) (Henneman et al, 2006(Henneman et al, , 2013Calsbeek et al, 2007;Morren et al, 2007;Mai et al, 2011;Smerecnik et al, 2011;Dijkstra et al, 2012;Vermeulen et al, 2014;Mavroidopoulou et al, 2015;McCormack et al, 2016;Fournier and Poulain, 2018;Rebitschek et al, 2019), 9% (n = 5) in Canada (Morin, 2009;Nielsen and El-Sohemy, 2012;Bombard et al, 2013;…”

“…The main potential harm identified was the possibility to use DNA of other individuals to blame them for a crime (45.2%), insurance discriminations (37.2%), use of genetic information by companies for targeted marketing strategies (35%). , 2009Morren et al, 2007;Makeeva et al, 2009;Stewart-Knox et al, 2009;Mai et al, 2011;Kaphingst et al, 2012;Kolor et al, 2012;Haga et al, 2013;Nicholls et al, 2013;Almeling, 2014;Vermeulen et al, 2014;Abrams et al, 2015;Dodson et al, 2015;Graves et al, 2015;Mavroidopoulou et al, 2015;Mählmann et al, 2016;Krakow et al, 2017;Metcalfe et al, 2018;Horrow et al, 2019) (Table 2). Thirty-eight percent of the studies (n = 15) evaluated citizens' knowledge regarding the role of genetic factors in disease risk (including reproductive risk/fetal disease risk) (Morren et al, 2007;Makeeva et al, 2009;Molster et al, 2009;Hahn et al, 2010;Smerecnik et al, 2011;Nicholls et al, 2013;Borzekowski et al, 2014;Vermeulen et al, 2014;Waters et al, 2014Waters et al, , 2016Waters et al, , 2017Abrams et al, 2015;Graves et al, 2015;Schmidlen et al, 2016;Simonstein and Mashiach-Eizenberg, 2016) (Table 2).…”

“…The topic of citizens' perceptions about benefits and risks related to the use of genomics or omics sciences in medicine was investigated by 56% (n = 30) of the studies included (Henneman et al, 2006(Henneman et al, , 2013Skirton et al, 2006;Calsbeek et al, 2007;Morren et al, 2007;Ishiyama et al, 2008;Makeeva et al, 2009;Morin, 2009;Stewart-Knox et al, 2009;Hahn et al, 2010;Lemke et al, 2010;Nielsen and El-Sohemy, 2012;Bombard et al, 2013;Haga et al, 2013;Nicholls et al, 2013;Almeling, 2014;Vermeulen et al, 2014;Etchegary et al, 2015;Kaphingst et al, 2015Kaphingst et al, , 2016Mavroidopoulou et al, 2015;Mählmann et al, 2016;McCormack et al, 2016;Miyamoto et al, 2016;Simonstein and Mashiach-Eizenberg, 2016;Fournier and Poulain, 2018;Metcalfe et al, 2018;Horrow et al, 2019;Jones et al, 2019;Middleton et al, 2020; Table 3). Most of them (59%, n = 16) showed that participants perceived benefits and usefulness from the use of genomics and omics science in medicine (Skirton et al, 2006;Morren et al, 2007;Makeeva et al, 2009;Morin, 2009;Stewart-Knox et al, 2009;Hahn et al, 2010;…”