Implementation considerations for offering personal genomic risk information to the public: a qualitative study

Smit, Amelia K.; Reyes-Marcelino, Gillian; Keogh, Louise; Dunlop, Kate; Newson, Ainsley J

doi:10.1186/s12889-020-09143-0

Cited by 14 publications

(6 citation statements)

References 44 publications

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“… 25 Few participants with high‐risk results expressed concerns about life insurance or cancer worry, but participants across all groups frequently mentioned the importance of confidentiality and privacy. The feasibility of providing personal risk information as part of tailored screening through health‐care professionals, such as a triaged approach of general practitioner and genetic counsellor contact according to the level of risk, 46 also requires further research.…”

Section: Discussionmentioning

confidence: 99%

Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public

Dunlop

Rankin

Smit

et al. 2021

Health Expectations

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Background There is mounting evidence of the benefit of risk‐stratified (risk‐tailored) cancer population screening, when compared to standard approaches. However, shifting towards this approach involves changes to practice that may give rise to implementation challenges. Objectives To explore the public's potential acceptance of risk‐stratified screening across different cancer types, including reducing screening frequency if at low risk and the use of personal risk information, to inform implementation strategies. Method Semi‐structured interviews were conducted with 40 public participants; half had received personal genomic risk information and half had not. Participants were prompted to consider different cancers. Data were analysed thematically as one dataset. Results Themes included the following: (a) a sense of security; (b) tailored screening is common sense; (c) risk and the need to take action; (d) not every cancer is the same; and (e) trust and belief in health messages. Both groups expressed similar views. Participants were broadly supportive of risk‐stratified screening across different cancer types, with strong support for increased screening frequency for high‐risk groups. They were less supportive of reduced screening frequency or no screening for low‐risk groups. Findings suggest the public will be amenable to reducing screening when the test is invasive and uncomfortable; be less opposed to forgo screening if offered the opportunity to screen at some stage; and view visible cancers such as melanoma differently. Conclusions Approaching distinct cancer types differently, tailoring messages for different audiences and understanding reasons for participating in screening may assist with designing future implementation strategies for risk‐stratified cancer screening.

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Section: Discussionmentioning

confidence: 99%

Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public

Dunlop

Rankin

Smit

et al. 2021

Health Expectations

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“…There is no clear model of how genomic services are (or will be) offered to patients. Opinions identified here could be used to inform the development of implementation strategies for incorporating genomic risk information into clinical practice and ensure implementation outcomes such as patient preferences and acceptability are considered [42]. Findings suggest health systems considering integrating genomic sequencing must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public and patient outreach and education.…”

Section: Discussionmentioning

confidence: 97%

Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care

Etchegary

Pullman

Simmonds

et al. 2021

Public Health Genomics

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Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. Results: While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. Conclusions: Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.

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“…The findings also add to our knowledge about interest in cancer predisposition testing in this population if conducted as part of routine clinical care, indicating support from survey respondents for offering genetic testing as part of routine clinical care. Little prior research has examined interest in population-based genetic testing as part of routine care, although in one prior survey conducted in the Netherlands about half of respondents preferred that pre-pregnancy cancer screening be offered via a general practitioner ( Plantinga et al, 2016 ) and another survey found that participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable ( Smit et al, 2020 ).…”

Section: Discussionmentioning

confidence: 99%

“…A number of different factors affecting interest in various types of sequencing results have been identified ( Mighton et al, 2019 ), including understanding and impact on quality of life ( Bollinger et al, 2012 ; Mighton et al, 2020 ). Early adopters of genome sequencing have expressed various health-related and non-health-related motivations ( Sanderson et al, 2016 ), and participants in genetic research have highlighted the importance of offers of personal genomic risk information being based on individual preferences ( Smit et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

et al. 2022

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Sequencing technologies can inform individuals’ risks for multiple conditions, supporting population-level screening approaches. Prior research examining interest in genetic testing has not generally examined the context of population-based approaches offered in routine healthcare or among ethnically diverse populations. Cancer predisposition testing and carrier screening could be offered broadly to women of reproductive age. This study therefore examined interest in these tests when offered as part of routine care, and predictors of interest, among an ethnically diverse sample of women aged 20–35. We conducted an online English-language survey of 450 women; 39% identified as Latina. We examined predictors of interest for two outcomes, interest in testing in the next year and level of interest, in multivariable logistic regression models and stratified analyses by Latina ethnicity. More than half of respondents reported being interested in cancer predisposition testing (55%) and carrier screening (56%) in the next year; this did not differ by ethnicity. About 26% reported being very interested in cancer predisposition testing and 27% in carrier screening. Latina respondents (32%) were more likely to be very interested in cancer predisposition testing than non-Latina respondents (22%; p < 0.03). In multivariable models, having higher worry about genetic risks, higher genetic knowledge, and higher perceived importance of genetic information were associated with higher interest across multiple models. Predictors of interest were generally similar by ethnicity. Our findings show substantial interest in both cancer predisposition testing and carrier screening among young women as part of routine healthcare with similar interest between Latina and non-Latina women. Efforts to broadly offer such testing could be important in improving access to genetic information. It will be critical to develop tools to help healthcare providers communicate about genetic testing and to address the needs of those who have less prior knowledge about genetics to support informed decision making.

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Implementation considerations for offering personal genomic risk information to the public: a qualitative study

Cited by 14 publications

References 44 publications

Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public

Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public

Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

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