Who seeks genetic susceptibility testing for Alzheimer’s disease? Findings from a multisite, randomized clinical trial

Roberts, J. Scott; Barber, Melissa; Brown, Tamsen; Cupples, L. Adrienne; Farrer, Lindsay A.; LaRusse, Susan; Post, Stephen G.; Quaid, Kimberly A.; Ravdin, Lisa; Relkin, Norman; Sadovnick, A. Dessa; Whitehouse, Peter J.; Woodard, John L.; Green, Robert C.

doi:10.1097/01.gim.0000132688.55591.77

Cited by 101 publications

(90 citation statements)

References 31 publications

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“…Cognitive and emotional factors, such as worry and perceived risk 24,25 related to lung cancer may influence engagement in learning about personal cancer risk, as might demographic variables. 26 Previous findings related to interest in smoking cessation suggest that uptake rates may be higher among those who smoke more cigarettes per day and express greater quit motivation. 27,28 Indeed, uptake rates may reflect quit motivation.…”

mentioning

confidence: 99%

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

O’Neill

White

Sanderson

et al. 2008

Genetics in Medicine

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Purpose: To examine the feasibility of offering genetic susceptibility testing for lung cancer (GSTM1) via the Internet to smokers who were blood relatives of patients with lung cancer. Outcomes include proportion who logged on to the study website to consider testing, made informed decisions to log on and to be tested. Methods: Baseline measures were assessed via telephone survey. Participants could choose to log on to the study website; those who did were offered testing. Informed decisions to log on and to be tested were indicated by concordance between the decision outcome and test-related attitudes and knowledge. Results: Three hundred four relatives completed baseline interviews. One hundred sixteen eligible relatives expressed further interest in receiving information via the web. Fifty-eight logged on and 44 tested. Those logging on expressed greater quit motivation, awareness of cancer genetic testing, and were more likely to be daily Internet users than those who did not log on. Approximately half of the sample made informed decisions to log on and to be tested. Conclusion: Interest in a web-based protocol for genetic susceptibility testing was high. Internet-delivered decision support was as likely as other modalities to yield informed decisions. Some subgroups may need additional support to improve their decision outcomes. Genet Med 2008:10(2):121-130. Key Words: Internet, genetic testing, test uptake, decision making, GSTM1, lung cancerAvailability of genetic susceptibility testing for common diseases is likely to increase as the evidence supporting gene-disease associations continues to grow. 1 There is a good deal of optimism that such testing might be beneficial for motivating individuals to adopt healthy lifestyles. 2 Genetic susceptibility testing for lung cancer has been suggested as a means to motivate smoking cessation. 3 However, a challenge for integrating such testing into smoking cessation or other behavior change interventions is that most of these interventions are self-directed, low intensity, and obliged to be low in cost to maximize dissemination. 4 Before any such integration, the feasibility of offering genetic susceptibility testing and conveying risk feedback, via alternate, user-friendly, self-directed delivery models, such as the Internet, must be assessed. 5 To our knowledge, no studies to date have offered genetic susceptibility testing using solely a web-based format. This is despite the fact that 75% of Americans use the Internet on a regular basis, and the impact of Internet applications on physician-patient communication and health care delivery continues to expand. 6 -8 Though no studies have examined delivery of genetic test results via the Internet, research to date supports the examination of alternate delivery models in some settings. For example, one trial delivered genetic susceptibility testing for alpha-1 antitrypsin deficiency, a smoking-linked form of emphysema, via the mail to unaffected individuals with some success. 9,10 Results of another trial, in which ...

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mentioning

confidence: 99%

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

O’Neill

White

Sanderson

et al. 2008

Genetics in Medicine

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“…Surveys and data from this study have demonstrated that substantial portions of such relatives, often over half of respondents, are interested in more fully understanding their risk. [7][8][9][10][11] The Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study was established to evaluate the feasibility, safety, and behavioral responses of providing general information on risk and specific risk assessment, including APOE genotype disclosure, to adult children of patients with AD (the "subjects" of our study). 12 These subjects were recruited either through systematic ascertainment from AD research registries at Boston University, Case Western, and Cornell or through self-referral at each site.…”

mentioning

confidence: 99%

Estimating risk curves for first-degree relatives of patients with Alzheimer’s disease: The REVEAL study

Cupples

Farrer

Sadovnick

et al. 2004

Genetics in Medicine

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123

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Purpose: The REVEAL study is a randomized, controlled study of the psychological and behavioral impact of APOE disclosure in a risk assessment protocol provided to first degree relatives of patients with Alzheimer's disease. The protocol presents risk information as cumulative incidence curves. This article describes how these curves were estimated. Methods: Curves were calculated using Bayes' rule to compute the posterior survival curves incorporating APOE information. Results: A combination of survival data from the MIRAGE study and gender-and age-specific APOE odds ratios were used to create risk curves for males and females within each of the 6 APOE genotypes. Conclusion: Utilizing comparative genotype relative risk information and survival data from family studies, estimates of gender-, age-, and genotype-specific risk can be generated for use in a risk assessment research study that features genotype disclosure. Alzheimer's disease (AD) is the leading cause of cognitive impairment among older persons, 1 and in the U.S., the prevalence of AD will continue to increase with the aging population. 2 Although the etiology of AD is not fully understood, there is clear evidence that genetic factors are important determinants of AD. 3,4 The gene for apolipoprotein E (APOE) has been identified as a common susceptibility polymorphism 5 with allele ⑀4 conferring 5 to 15 times greater risk, depending upon whether an individual has one or two copies. 6 The ⑀4 allele is common in the U.S. population with a frequency of about 14%. Although individuals with one or two ⑀4 alleles can attain late age without developing AD, the burden of risk attributable to APOE is substantial. 7 Relatives of individuals affected with AD are increasingly aware that they may be at increased risk for developing AD themselves. Surveys and data from this study have demonstrated that substantial portions of such relatives, often over half of respondents, are interested in more fully understanding their risk. 7-11 The Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study was established to evaluate the feasibility, safety, and behavioral responses of providing general information on risk and specific risk assessment, including APOE genotype disclosure, to adult children of patients with AD (the "subjects" of our study). 12 These subjects were recruited either through systematic ascertainment from AD research registries at Boston University, Case Western, and Cornell or through self-referral at each site. After a general information session and administration of baseline questionnaires, subjects were randomly assigned to either the "Control" group that would receive risk information based on age, gender, and family history only or the "Intervention" group that would receive the same risk information as the controls plus risk information based on the subject's APOE genotype. After disclosure of the risk information by a genetic counselor, the Control and Intervention groups were followed for one year through telephone and in-person st...

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“…[176][177][178][179][180] This type of screening cannot predict whether or not someone will develop dementia in later life, but can indicate whether they are at greater risk. Adult children of patients with Alzheimer's disease were invited to take part in the study.…”

Section: Emotional Preparationmentioning

confidence: 99%

“…176,180 So far, no significant negative psychosocial effects have been found. 177,181 The conclusion is not that screening for genetic sensitivity for untreatable conditions such as Alzheimer's disease can be responsibly offered, but rather that when assessing the benefit that such screening can have for the participants, consideration of the benefits should not be limited to ascertaining whether treatment or prevention is available: attention should also be paid to the possible importance of other action options, or even just receiving information in good time, for those affected. The normative framework must therefore offer space for this.…”

Section: Emotional Preparationmentioning

confidence: 99%

Rapid aneuploidy detection or karyotyping? Ethical reflection

et al. 2011

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Who seeks genetic susceptibility testing for Alzheimer’s disease? Findings from a multisite, randomized clinical trial

Cited by 101 publications

References 31 publications

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

Estimating risk curves for first-degree relatives of patients with Alzheimer’s disease: The REVEAL study

Rapid aneuploidy detection or karyotyping? Ethical reflection

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