TABLE 3.

Barriers

Barriers	References
Personal benefit
No perceived personal benefit from testing	Halbert et al. (2017), Mayo-Gamble et al. (2019), Miller, (2020), Nooruddin et al. (2020), Umeukeje et al. (2019)
Insufficient compensation for research participation	Nooruddin et al. (2020)
Burdens of Testing
Requires giving blood	Nooruddin et al. (2020), Ochs-Balcom et al. (2011)
Requires visit to specialist or research location	Armstrong et al. (2012), McDonald et al. (2014)
Time	Nooruddin et al. (2020), Ochs-Balcom et al. (2011), Parikh et al. (2019)
Cost	Bevan et al. (2003), Gordon et al. (2017), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Mayo-Gamble et al. (2019), Miller, (2020), Myers et al. (2000)
Access to and Use of Results
Future insurance discrimination	Armstrong et al. (2012), Bevan et al. (2003), Gordon et al. (2017), Gordon et al. (2018), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019
Loss of confidentiality	Bevan et al. (2003), McDonald et al. (2014), Myers et al. (2000), Ochs-Balcom et al. (2011)
Misuse of information	Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Nooruddin et al. (2020)
Financial impact of results	Gordon et al. (2018), Halbert, Gandy Jr, et al. (2006), Halbert, Kessler, et al., 2006, Miller, (2020)
Psychological harm from results	Gordon et al. (2018), Halbert, Gandy Jr, et al., 2006, Halbert, Kessler, et al. (2006), Myers et al. (2000), Umeukeje et al. (2019)
Harm to others	Gordon et al. (2018), Umeukeje et al. (2019)
Stigma	Gordon et al. (2018), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019
Discrimination	Bevan et al. (2003), Halbert, Gandy Jr, et al. (2006), Halbert, Kessler, et al. (2006), Halbert et al. (2017), Powell-Young and Spruill (2013), Umeukeje et al. (2019)
Trust
Fear being used as lab rat	Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019
Mistrust of scientists or healthcare system	Armstrong et al. (2012), Gordon et al. (2018), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Kikut et al. (2020), Miller, (2020), Nooruddin et al. (2020), Ochs-Balcom et al. (2011), Umeukeje et al. (2019)
Questionable reliability of science and results	Halbert, Gandy Jr, et al. (2006), Halbert, Kessler, et al. (2006), Miller, (2020)
Required to give DNA	Nooruddin et al. (2020), Parikh et al. (2019)
Race
Genetic ancestry verus race or culture - lack of clarity about who truly is at risk	Bevan et al. (2003), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Miller, (2020)
Racial profiling	Gordon et al. (2017)
Universal testing is more appropriate than race-based testing	Bevan et al. (2003), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Mayo-Gamble et al. (2019)
Race-specific marketing	Armstrong et al. (2012), McDonald et al. (2014)
Communication and Information Needs
Little discussion of disease within families or community	Mayo-Gamble et al. (2019), Ochs-Balcom et al. (2011)
Poor physician knowledge or communication	Mayo-Gamble et al. (2019)
Lack knowledge about genetics or research	Halbert et al. (2017), Mayo-Gamble et al. (2019), Ochs-Balcom et al. (2011)
Lack of clarity about what test results mean for individual	Gordon et al. (2018), Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Horowitz et al. (2016)
Uncertainty about what it means to be at risk	Gordon, Amórtegui, et al., 2019, Gordon, Amórtegui, et al., 2019, Gordon, Wicklund, et al., 2019, Horowitz et al. (2016)
Overall need for more health and genetic information	Gustafson et al. (2007), Horowitz et al. (2016), Miller, (2020)
Lack of clarity about how African American identity is connected to APOL1 variants	Gordon et al. (2018)
Need for more community education and improved communication regarding APOL1 and SC	Mayo-Gamble et al. (2019), Umeukeje et al. (2019), Young et al. (2019)
Clinicians' Concerns
Tests of unknown significance	Koraishy et al. (2018)
Cost	Koraishy et al. (2018)
Uncomfortable using race in testing/ethical concerns with testing	Horowitz et al. (2014), Koraishy et al. (2018)
Feel ill-prepared to address genetics	Horowitz et al. (2014), Horowitz et al. (2016), Powell-Young and Spruill (2013)
Testing could result in discrimination against minorities	Powell-Young and Spruill (2013)