Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research

Johansson, Jennifer Viberg; Segerdahl, Pär; Ugander, Ulrika Hösterey; Hansson, Mats; Langenskiöld, Sophie

doi:10.1016/j.pec.2017.09.009

Cited by 13 publications

(12 citation statements)

References 29 publications

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“…Similar to Viberg Johansson et al (2017) we found that lay people tend to take genetic risk as a binary concept: you are at risk or you are not. Although we see in our results the division into binary codes, too, we observed the use of binary codes to simplify the weighing of the future consequences of a decision.…”

Section: Discussionsupporting

confidence: 68%

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

2019

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The interpretation of genetic information in clinical settings raises moral issues about adequate risk communication and individual responsibility about one’s health behavior. However, it is not well-known what role numeric probabilities and/or the conception of disease and genetics play in the lay understanding of predictive genetic diagnostics. This is an important question because lay understanding of genetic risk information might have particular implications for self-responsibility of the patients. Aim: Analysis of lay attitudes and risk perceptions of German lay people on genetic testing with a special focus on how they deal with the numerical information. Methods: We conducted and analyzed seven focus group discussions (FG) with lay people ( n = 43). Results: Our participants showed a positive attitude toward predictive genetic testing. We identified four main topics: (1) Anumeric risk instead of statistical information; (2) Treatment options as a factor for risk evaluation; (3) Epistemic and aleatory uncertainty as moral criticism; (4) Ambivalence as a sign of uncertainty. Conclusion: For lay people, risk information, including the statistical numeric part, is perceived as highly normatively charged, often as an emotionally significant threat. It seems necessary to provide lay people with a deeper understanding of risk information and of the limitations of genetic knowledge with respect to one’s own health responsibility.

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Section: Discussionsupporting

confidence: 68%

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

2019

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“…Existing research suggests that members of populations currently underrepresented in GR may be motivated to participate by a wide range of reasons from personal benefit to altruism (Buseh, Stevens, Millon-Underwood, Townsend, & Kelber, 2013;Heredia et al, 2017;Sanderson et al, 2013;Streicher et al, 2011;Trinidad et al, 2015). There is only limited research, however, that further explores how individuals from diverse communities may conceptualize constructs like altruism (Davis, Arnold, Mills, & Miele, 2019) and risk (Dixon-Woods et al, 2007;Viberg Johansson, Segerdahl, Ugander, Hansson, & Langenskiold, 2018), especially in the context of GR, which often involves indefinite storage of genetic samples for unspecified future use (McGuire & Beskow, 2010).…”

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confidence: 99%

Understanding Diverse Perspectives on Genetic Research Through Focus Group Talk

Ridgeway

Albertie

Pantoja

et al. 2019

International Journal of Qualitative Methods

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While genetic research (GR) is fueling discoveries in fields like precision medicine, there is a growing concern that underrepresentation of racial and ethnic populations in GR will limit access to its benefits and subsequently worsen health disparities. This study aimed to understand GR perceptions among members from underrepresented communities by studying discourse and language use in focus group discussions. Nine focus groups were conducted with adults from three populations: African American, Hispanic/Latino, and Native American; 53 women and 15 men participated. Data were analyzed using methods of discourse and content analysis. Discourse analysis highlighted how conceptualization of science and family—rooted in historical experiences—can influence views on GR risks and benefits to self and others. The use of focus group discourse in particular provided an opportunity for group sense making around the science and ethics of GR. Content analysis highlighted differences between the language use of focus group moderators, who spoke about scientific discovery and research oversight, and that of participants, whose talk highlighted ancestral bloodline, personal risk, and ethical concerns. The findings can inform efforts to bolster GR participation, including recruitment and educational campaigns. However, they also challenge researchers to consider areas of discordance between their own and community members’ conceptualization of the risks and benefits of GR participation, including the notion of future and family benefit.

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“…Risk interpretation is connected to important uncertainty concerning the probability that a pathogenic genetic test result will actually occur; the ambiguity of whether the pathogenic genetic variant will actually cause disease and whether this could be prevented; and the psychosocial and emotional complexities associated with that assessment [ 45 , 46 ]. Previous studies have also suggested that decision-makers may use a binary conception of genetic risk as a heuristic for decision-making [ 32 , 47 ]. Moreover, our finding that social relations (such as respect for (medical) experts or a sense of belonging with family or friends) may be used as external guidance illustrate the wish of some counselees to outsource the decision of whether to take the genetic test to someone else.…”

Section: Discussionmentioning

confidence: 99%

“…Qualitative inquiries that implicitly or explicitly cover the use of heuristics in the genetic testing decision-making progress focus on the UK [ 27 ], Canada [ 28 , 29 ], or the United States [ 30 ]. Most qualitative studies distinctively focused on risk perception [ 31 , 32 ] or psychosocial implications [ 33 , 34 ]. In contrast to previous inquiries on the role of heuristics in the genetic testing decision-making process, our study takes an inductive approach to investigate the influence of heuristics and focuses on the implications for informed decision-making in the context of genetic testing for inherited cancer risk.…”

Section: Introductionmentioning

confidence: 99%

The use of heuristics in genetic testing decision-making: A qualitative interview study

et al. 2021

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Background Decision-making concerning predictive genetic testing for hereditary cancer syndromes is inherently complex. This study aims to investigate what kind of complexities adults undergoing genetic counseling in Switzerland experience, how they deal with them, and what heuristics they use during the decision-making process. Methods Semi-structured qualitative interviews with eighteen Swiss adults seeking genetic counseling for hereditary cancer syndrome genetic testing and two counseling physicians were conducted and analyzed using a grounded theory approach. Results Counselees stated that once they were aware of their eligibility for genetic testing they perceived an inevitable necessity to make a decision in a context of uncertainties. Some counselees perceived this decision as simple, others as very complex. High emotional involvement increased perceived complexity. We observed six heuristics that counselees used to facilitate their decision: Anticipating the test result; Focusing on consequences; Dealing with information; Interpreting disease risk; Using external guidance; and (Re-)Considering the general uncertainty of life. Limitations Our findings are limited to the context of predictive genetic testing for hereditary cancer syndromes. This qualitative study does not allow extrapolation of the relative frequency of which heuristics occur. Conclusions The use of heuristics is an inherent part of decision-making, particularly in the complex context of genetic testing for inherited cancer predisposition. However, some heuristics increase the risk of misinterpretation or exaggerated external influences. This may negatively impact informed decision-making. Thus, this study illustrates the importance of genetic counselors and medical professionals being aware of these heuristics and the individual manner in which they might be applied in the context of genetic testing decision-making. Findings may offer practical support to achieve this, as they inductively focus on the counselees’ perspective.

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Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research

Cited by 13 publications

References 29 publications

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

Understanding Diverse Perspectives on Genetic Research Through Focus Group Talk

The use of heuristics in genetic testing decision-making: A qualitative interview study

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