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Associations between self-referral and health behavior responses to genetic risk information.

ABSTRACT: Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Examining the influence of different study recruitment strategies may help reconcile inconsistencies.Secondary analyses were conducted on data from the REVEAL study, a series of randomized clinical trials examining the impact of genetic susceptibility testing for Alzheimer's disease (AD). We tested whether self-referred participants (SRPs) were more likely than actively recruited participants (ARPs) to report health behavior and advance planning changes after AD risk and APOE genotype disclosure.Of 795 participants with known recruitment status, 546 (69%) were self-referred and 249 (31%) had been actively recruited. SRPs were younger, less likely to identify as African American, had higher household incomes, and were more attentive to AD than ARPs (all P?

SUBMITTER: Christensen KD

PROVIDER: S-EPMC4311425 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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Associations between self-referral and health behavior responses to genetic risk information.

Christensen Kurt D KD Roberts J Scott JS Zikmund-Fisher Brian J BJ Kardia Sharon Lr SL McBride Colleen M CM Linnenbringer Erin E Green Robert C RC

Genome medicine 20150131 1

<h4>Background</h4>Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Examining the influence of different study recruitment strategies may help reconcile inconsistencies.<h4>Methods</h4>Secondary analyses were conducted on data from the REVEAL study, a series of randomized clinical trials examining the impact of genetic susceptibility testing for Alzheimer's disease ...[more]

PMID: 25642295

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Project description:Background and objectivesLiving donor guidelines-both national and international-either do not address or are vague about what information can be shared between prospective living donors and transplant candidates, as well as when to make such disclosures and who should make them. This study explored the attitudes of donors and recipients regarding how much information they believe should be shared.Design, setting, participants, & measurementsTwo Email invitations were sent by the National Kidney Foundation (national headquarters) to its Email listservs, inviting members to participate in an online survey to assess the attitudes of kidney transplant stakeholders regarding the disclosure of health and health risk behavior information.ResultsFrom approximately 4200 unique Email addresses, 392 (9.3%) respondents completed part or all of the survey. The analyses were limited to the 236 respondents who self-identified as either donors (potential and actual, n=160) or recipients (candidates and actual, n=76). Overall, 79% (186 of 234) of respondents supported disclosure of general recipient health information that would affect post-transplant outcome to donors, and 88% (207 of 235) supported disclosure of general donor health information to recipients. Recipients and donors were also supportive of sharing donor and recipient information, particularly information relevant to graft and patient survival. There is some reticence, however, about sharing social information. The closer the relationship, the more information they are willing to share. Both donors and recipients wanted the transplant team involved in the information disclosure. Over three quarters of donors (79%) and recipients (78%) did not think the recipient had a right to know why a donor was excluded from donating.ConclusionsBoth donors and recipients want a significant amount of health information to be disclosed. The opinions of other stakeholders need to be surveyed to determine whether a revision of current policies and practices is warranted.

Dataset Information

Associations between self-referral and health behavior responses to genetic risk information.

Publications

Associations between self-referral and health behavior responses to genetic risk information.

Similar Datasets

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