Population-based biobank participants’ preferences for receiving genetic test results

Yamamoto, Kayono; Hachiya, Tsuyoshi; Fukushima, Akimune; Nakaya, Naoki; Okayama, Akira; Tanno, Kozo; Aizawa, Fumie; Tokutomi, Tomoharu; Hozawa, Atsushi; Shimizu, Atsushi

doi:10.1038/jhg.2017.81

Cited by 32 publications

(34 citation statements)

References 27 publications

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“…In this study, nearly 90% of our participants were over 60 years old. This is consistent with our previous preference research based on residents of the Iwate and Miyagi prefectures, in which almost 76% of subjects were over 60 [6]. This may be because younger people are busy with work and child rearing, and could not find the time to participate in our genetics workshop.…”

Section: Participant Characteristicssupporting

confidence: 90%

“…The highest rate of genetic result preference was 98%, both before and after the workshop. This preference rate was higher than the rates in the Tohoku Medical Megabank project's participants (88%) and residents of the Tohoku area (82%) in a previous study [6]. More of our participants preferred to be informed of their genetic results regarding lifestyle diseases and pharmacogenetics than adult-onset non-clinically actionable diseases and all genetic information, both before and after the genetics workshop.…”

Section: Participant Characteristicscontrasting

confidence: 65%

“…The Tohoku Medical Megabank Project, a populationbased biobank in Japan [5], has begun returning individual genetic information regarding familial hypercholesterolemia. We have previously studied the population-based biobank participants' preferences to receive genetic test results, revealing that nearly 90% of participants enrolled in the Tohoku Medical Megabank Project cohort study expressed a preference to receive their results [6]. However, participant preferences based on disease categories have not been systematically studied.…”

Section: Introductionmentioning

confidence: 99%

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A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop

et al. 2018

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Several biobanks have begun returning genetic results to individuals, making the development of public genetic literacy an urgent task for their effective use. No research exists regarding the effects of genetic education on biobank participants, so we conducted genetics workshops with specialists, and surveyed differences in the participants' (n = 112) preferences to receive their own genetic information by disease categories and their genetic knowledge using questionnaires before and after the workshops. Almost 90% of our participants were over 60 years old, which was similar to our previous preference research. The preference to receive five of the six categories of genetic information (lifestyle diseases, pharmacogenetics, adult-onset non-clinically actionable diseases, non-clinically actionable multifactorial diseases, and all genetic information) was slightly but significantly decreased after the genetics workshop. More participants preferred to receive genetic results regarding lifestyle diseases, pharmacogenetics, and adult-onset clinically actionable diseases after the workshop, while less participants preferred to receive information regarding adult-onset non-clinically actionable diseases, non-clinically actionable multifactorial diseases, and all genetic information. Total genetic knowledge scores significantly increased after the workshop (before: 11.89, after: 13.30, p < 0.001). Our findings suggest that genetics workshops are useful to improve the genetic literacy of genome cohort participants.

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Section: Participant Characteristicssupporting

confidence: 90%

Section: Participant Characteristicscontrasting

confidence: 65%

Section: Introductionmentioning

confidence: 99%

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A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop

et al. 2018

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“…We were unable to perform medical care within the research framework of the TMM study; however, we aim to translate the results of the TMM study for wider genomic medicine research. Thus, by receiving training on clinical genetics, ToMMo GMRCs could be in charge of returning genomic results to participants [21]. That is, in this way, we hope that ToMMo GMRCs could become specialists in community-based healthcare.…”

Section: Discussionmentioning

confidence: 99%

A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

et al. 2019

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Background Genome cohort studies are used to analyze interactions between genetic and environmental factors, providing valuable information for personalized healthcare. Large-scale and long-term cohort studies require a number of specially trained personnel, of whom those involved in obtaining informed consent play a vital role, especially during the initial phase of such studies. The Japanese Society of Human Genetics (JSHG) previously established a certification system for genome medical research coordinators (GMRCs) responsible for obtaining written consent via face-to-face explanation. Meanwhile, in the Tohoku Medical Megabank Organization (ToMMo), GMRCs are expected to play important roles not only in obtaining informed consent and conducting various assessments, but also in communicating with participants throughout the long-term follow-up. Based on the JSHG program, we therefore developed a specific education and training program for ToMMo GMRCs consisting of 17 lectures, one practical training session on the informed consent procedure, and written and interview examinations. Re-education workshops aimed at self-improvement are also carried out following certification. In this study, we evaluated the education and training program in terms of overall understanding, usefulness, and satisfaction using an anonymous questionnaire. Methods An anonymous questionnaire addressing each aspect of the education and training program (understanding, usefulness, and satisfaction) was distributed among 152 qualified ToMMo GMRCs. Responses were received from 94 participants (61.8%). Results There was a significant association between the level of overall understanding of lectures and medical qualification (nurse or clinical laboratory technologist), but not with age or educational background. The level of understanding and overall usefulness were lower in sessions related to genetics and epidemiology than those dealing with ToMMo practices. In the re-education workshops, GMRCs showed a preference for and hoped to learn more about both background knowledge and research progress in the ToMMo. Conclusions The results of our questionnaire suggest that not all ToMMo GMRCs are able to understand everything during the initial education and training program, especially in terms of genomic medicine. Continuous re-education is therefore vital in improving knowledge, skills and motivation, and preparing GMRCs for a specialist role in community-based personalized healthcare. Electronic supplementary material The online version of this article (10.1186/s12909-019-1725-5) contains supplementary material, which is available to authorized users.

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“…This finding is quite odd in the landscape of studies on the same topic. In fact, regardless of the settings and type of participants surveyed [e.g., general population (15,16), general population vs. research participants (17), patients (18,19), biobank effective participants vs. potential participants (20,21)], a great majority of studies found that the disclosure of individual results is well accepted and can be even positively influential in the decision to donate. However, a few studies have already highlighted certain specific signals of the difficulties in disclosing individual health information.…”

Section: Discussionmentioning

confidence: 99%

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

Toccaceli

Fagnani

Gigantesco

et al. 2019

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Background: Research based on the use of biological material stored in biobanks together with health information and clinical data may produce new strategies for prevention, early detection, accurate diagnoses, and tailored treatments. A postal survey on the knowledge and attitude towards research biobanking was conducted among a sample of individuals previously recruited in urban primary care services in Rome (Italy), and screened for major depressive disorder (MDD) (SET-DEP project). The present study aims at exploring the attitude of these participants towards the potential future disclosure of individual health results when participating in research biobanking. Methods: The survey was conducted with a validated questionnaire on the knowledge and preferences about donation for research biobanks; self-perceived health was collected and The Satisfaction With Life Scale was administered. Means and percentages were compared across groups by using t test or ANOVA and chi-square test respectively. Results: Out of 416 subjects who underwent the screening for MDD, 51 (12.2%) subjects responded to the mail questionnaire. The large majority of respondents (42 subjects, >82%) declared they would agree to the potential use of their biological samples for biomedical research purposes only if no feedback results regarding health or predisposition to diseases would be given to them. The agreement towards research biobanking was not associated with satisfaction with life (ANOVA: p=0.82) or self-perceived health (chi-square test: p=0.98). Conclusions: It is widely recognized that willingness to donate diminishes when the research scenario raises moral, religious or political concerns. Nevertheless, other emerging concerns, more deeply linked to an individual psychosocial sphere, may also affect research biobanking. Our findings show a prevailing preference opposing the disclosure of individual health results not only among MDD positive screened but also – and even more – among MDD negative screened participants. This suggests that there might be relevant personal factors influencing people’s preferences with respect to the feedback of individual results in the case of psychiatric disorders such as depression. Moreover, these preferences do not seem to depend on the perceived heath status or subjective wellbeing of respondents.

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Population-based biobank participants’ preferences for receiving genetic test results

Cited by 32 publications

References 27 publications

A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop

A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop

A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

Could the disclosure of individual health results hamper biobanking? Findings from a survey on potential donors screened for depression

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