A survey on awareness, knowledge and preferences toward genetic testing among the United States general public

Abstract

Aim: To understand awareness, knowledge and preferences regarding genetic testing among the USA general public. Methods: A cross-sectional online survey using a Qualtrics Panel. Results: Among 1600 respondents, 545 (34%) were White, 411 (26%) Black, 412 (26%) Hispanic or Latin(x) and 232 (15%) Asian. Most had heard of ancestry testing (87%) and genetic health risk testing (69%), but a third thought inherited genes were only a little or not at all responsible for obesity (36%) and mental health (33%). The majority preferred pre-emptive pharmacogenetic testing (n = 74%) compared with reactive testing. Statistically significant differences between racial/ethnic groups and rural-urban respondents were observed. Conclusion: Most preferred pre-emptive pharmacogenetic testing; however, about one-quarter preferred reactive testing. Preferences should be discussed during patient–clinician interactions.

Plain language summary

What is this study about?

This study presents a large online survey among the USA general public to understand their awareness, knowledge and preferences about genetic testing and how this may vary by racial/ethnic group and rural/urban status.

What were the results?

Most survey respondents had heard of ancestry testing (87%) and genetic health risk testing (69%). However, over a third of respondents thought that inherited genes may be only a little or not at all responsible for obesity (36%) and mental health (33%). When asked about preferences for pre-emptive compared with reactive pharmacogenetic testing, the majority preferred pre-emptive testing (n = 74%). Statistically significant differences between racial/ethnic groups as well as rural-urban respondents were seen.

What do the results mean?

The US general public may have a different understanding of genetic testing for different diseases, and have different preferences when it comes to the timing of testing. Appropriate educational content targeting the link between genetics and specific diseases should be prepared, and preferences for pre-emptive or reactive testing should be discussed during visits with healthcare providers.

Summary points

• Genetic information is rapidly evolving and previous studies rarely focused on the extent of familiarity with newer genomic terms and procedures among the USA general public.

• One of the striking findings from this survey is that half of the total respondents were not aware of genetic testing in the context of choice of treatments, identifying adverse events from medications, and medication dosage optimization.

• A relatively smaller proportion of Black respondents and rural residents thought that genetic tests could identify medication side effects or optimize dosages compared with their counterparts.

• Most respondents were willing to choose pre-emptive over reactive testing to select the best medications for them.

Keywords: :

• awareness
• genetic testing
• knowledge
• preference
• survey

Financial disclosure

Funding was provided to Natalie Hohmann by Auburn University. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Competing interests disclosure

The authors have no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Writing disclosure

No writing assistance was utilized in the production of this manuscript.

Acknowledgments

Currently, Shahariar Mohammed Fahim is employed at the Institute for Clinical and Economic Review (ICER) as a Research Lead.

Additional information

Funding

Funding was provided to Natalie Hohmann by Auburn University. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.