Evaluation of a Web-based decision aid for people considering the APOE genetic test for Alzheimer risk

Ekstract, Michael; Holtzman, Golde I.; Kim, Kye Y.; Willis, Susan M.; Zallen, Doris T.

doi:10.1038/gim.2016.170

Cited by 10 publications

(5 citation statements)

References 25 publications

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“…The vulnerability of grandchildren who have these first-hand experiences is something that must be taken seriously by health professionals, DTC companies, policymakers and other relevant stakeholders, if this test is offered to young people. Decision aids such as the one developed Ekstract and colleagues ( Ekstract et al, 2017 ), if validated for children and young people, might provide tailored, entry-point educational assistance to those considering APOE testing. In the clinic, healthcare professionals must include young people in discussions about LOAD risk in the family and the optimal time of testing when parents request predictive genetic testing of children.…”

Section: Discussionmentioning

confidence: 99%

Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease

Pavarini

Hamdi

Lorimer

et al. 2021

European Journal of Medical Genetics

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Purpose Since the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer's disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of young people, who are a key target group for DTC services. Methods Thirty-one grandchildren of people with LOAD, aged 16–26, were interviewed about their moral attitudes and motivations with regards to DTC genetic testing for LOAD. Results Even though most participants claimed that people should have the right to access these services, they also expressed concerns about potential distress in response to learning about risk, particularly for minors. About a third were interested in testing, primarily to gain self-knowledge regarding one's health; however, face-to-face services were vastly preferred over the online option. Conclusion While DTC genetic companies often market their services as a “fun consumer product”, DTC testing for LOAD was largely understood as a serious health screening procedure and a vulnerable moment in the lives of young people in Alzheimer's families. This points to the importance of appropriate standards of information and support to young people pre- and post-testing.

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Section: Discussionmentioning

confidence: 99%

Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease

Pavarini

Hamdi

Lorimer

et al. 2021

European Journal of Medical Genetics

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“…Before introducing any potential decision‐support tool, however, it is important that it is thoroughly evaluated in a clinical setting, particularly in the emerging field of decisional science where evidence to guide implementation is still limited (Ekstract et al ; Syrowatka et al ). As part of our evaluation of DECIDE, we performed a randomized trial to compare the effectiveness and acceptability of DECIDE to conventional genetic counseling, using a non‐inferiority model, in families considering genomic testing for their child with early onset epilepsy.…”

Section: Introductionmentioning

confidence: 99%

“…It presents the pros and cons of sequencing, including issues of incidental findings (if they are returned or offered) and variants of unknown significance. DECIDE guides the user to weigh the pros and cons of GWS in the context of his or her own values and tailors the display of options to promote choices that are concordant with the user's informed goals and preferences (Bansback et al 2014 Before introducing any potential decision-support tool, however, it is important that it is thoroughly evaluated in a clinical setting, particularly in the emerging field of decisional science where evidence to guide implementation is still limited (Ekstract et al 2017;Syrowatka et al 2016). As part of our evaluation of DECIDE, we performed a randomized trial to compare the effectiveness and acceptability of DECIDE to conventional genetic counseling, using a non-inferiority model, in families considering genomic testing for their child with early onset epilepsy.…”

mentioning

confidence: 99%

Assessing an Interactive Online Tool to Support Parents' Genomic Testing Decisions

Adam

Birch

Coe

et al. 2018

Journal of Genetic Counseling

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Clinical use of genome-wide sequencing (GWS) requires pre-test genetic counseling, but the availability of genetic counseling is limited. We developed an interactive online decision-support tool, DECIDE, to make genetic counseling, patient education, and decision support more readily available. We performed a non-inferiority trial comparing DECIDE to standard genetic counseling to assess the clinical value of DECIDE for pre-GWS counseling. One hundred and six parents considering GWS for their children with epilepsy were randomized to conventional genetic counseling or DECIDE. Following the intervention, we measured parents' knowledge and empowerment and asked their opinions about using DECIDE. Both DECIDE and conventional genetic counseling significantly increased parents' knowledge, with no difference between groups. Empowerment also increased but by less than 2% in each group. Parents liked using DECIDE and found it useful; 81% would recommend it to others; 49% wished to use it along with a genetic counselor; 26% of parents preferred to see a genetic counselor; 7% preferred DECIDE alone; and 18% had no preference. DECIDE appears equivalent to genetic counseling at conveying information. In addition, it was highly acceptable to the majority of study participants, many of whom indicated that it was useful to their decision-making. Use of DECIDE as a pre-test tool may extend genetic counseling resources.

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“…29 One such resource for help with decisions regarding APOE testing is the tool at https://genetestornot.org. 30 Since direct-to-consumer testing is chosen so often and was used by all the participants in this study, these companies would appear to have a responsibility to provide educational tools prior to testing. As the participants themselves urge, the opportunity to opt out of specific forms of genetic testing is a decision that should be made before any DNA sample is provided, not after the test has been done, with the result only a click away.…”

Section: Discussionmentioning

confidence: 99%

“Well, good luck with that”: reactions to learning of increased genetic risk for Alzheimer disease

Zallen

2018

Genetics in Medicine

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Evaluation of a Web-based decision aid for people considering the APOE genetic test for Alzheimer risk

Abstract: This decision aid can provide useful educational assistance to many individuals as they consider APOE genetic testing as well as facilitate further discussions with their health-care providers.Genet Med advance online publication 03 November 2016.

Cited by 10 publications

References 25 publications

Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease

Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease

Assessing an Interactive Online Tool to Support Parents' Genomic Testing Decisions

“Well, good luck with that”: reactions to learning of increased genetic risk for Alzheimer disease

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