Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age

Cuccaro, Michael L.; Manrique, Clara P.; Quintero, Maria A.; Martínez, Ricardo; McCauley, Jacob L.

doi:10.3389/fgene.2020.00120

Cited by 4 publications

(4 citation statements)

References 31 publications

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“…In that case, their motivation could be explained by the incentive that glaucoma genetic research may represent a salient path in the search for glaucoma cure. However, our findings on the relationship between age and willingness to participate in genomic research differs from the published findings from a genomic study conducted among participants with multiple sclerosis by Cucarro and co workers which showed that younger patients were more likely to participate in the genetic study for multiple sclerosis when the motivation was to find a cure for multiple sclerosis compared to older patients [31]. The impact of physical disability associated with multiple sclerosis for the younger active population may account for this difference in addition to the fact that they are still early in the disease process.…”

Section: Plos Onecontrasting

confidence: 99%

Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study

Uche,

Okoye,

Kizor-Akaraiwe

et al. 2023

PLoS ONE

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Background Genomic research advances the understanding of human health and disease. It also drives both the discovery of salient genetic association(s) as well as targeted screening, diagnostic and therapeutic strategies. Human subject participation is crucial for the success of genomic research. Methods This is a cross sectional analytical study conducted at two tertiary centers in Enugu Southeast Nigeria. Semi structured questionnaires were administered to eligible consenting participants. Data on their demographics, willingness to participate in genomic research and motivation for participation were obtained. Data was analyzed using Stata version 17 and summarized using median, frequencies and interquartile range(IQR). Associations between covariates were evaluated with Chi square test and multivariable logistic regression. Results Among 228 glaucoma subjects who participated in our study,119(52.2%) were female and 109(47.8%) were male. The median age was 64 years(IQR = 50–76). Although 219 (96.0%) participants expressed willingness to participate in a glaucoma genetic study, only 27(11.9%) of them will be willing to participate if there will not be feedback of results to participants (χ2 = 18.59, P<0.001). No participant expressed willingness to submit ocular tissue samples. Majority (96.2%) of subjects will not participate if the intended research required submission of body samples after death. Desire to know more about glaucoma (63%) was the most common reason for participation. In a multivariable logistic model, subjects between 61–90 years (p = 0.004, OR = 7.2) were 7 times more likely to express willingness to participate in glaucoma genetic research after adjusting for other covariates when compared to subjects aged 41–60 years. Other covariates did not influence participants’ willingness. Conclusion Glaucoma subjects are more likely to be willing to participate in genetic research, if they would receive feedback of results. Willingness to participate in genetic research is significantly associated with age. Limitations We did not evaluate the salient options for feedback of results to participants in our study.

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Section: Plos Onecontrasting

confidence: 99%

Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study

Uche,

Okoye,

Kizor-Akaraiwe

et al. 2023

PLoS ONE

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“…These findings were documented in a cross‐sectional study conducted in Saudi Arabia, revealing a significant association between barriers to engaging in genetic research and participants who were younger and less educated 16 . In contrast, numerous other studies did not find a correlation between education and the consent to participate in genetic research 17–20 . This incongruity may be attributed to the diversity of diseases under investigation, variations in geographical locations and populations, coupled with the inherent disparities in educational strata ranging from graduate degrees to collegiate education.…”

Section: Discussionmentioning

confidence: 94%

“…16 In contrast, numerous other studies did not find a correlation between education and the consent to participate in genetic research. [17][18][19][20] This incongruity may be attributed to the diversity of diseases under investigation, variations in geographical locations and populations, coupled with the inherent disparities in educational strata ranging from graduate degrees to collegiate education.…”

Section: Discussionmentioning

confidence: 99%

Parental perspectives on pediatric inflammatory bowel disease: Unraveling concerns, and study participation willingness

Eindor‐Abarbanel,

Pinchevski,

Shalem

et al. 2024

J. pediatr. gastroenterol. nutr.

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ObjectivesThe impact of disease burden extends beyond pediatric inflammatory bowel disease (IBD) patients to include their parents. Previous studies, predating the biologic era, have highlighted parental concerns about potential side effects associated with IBD medications. However, there is a notable gap in the literature regarding parents' perceptions of clinical studies involving pediatric IBD patients. This study aims to explore the specific concerns troubling parents of children with IBD, identifying factors influencing these concerns, and assesses parental willingness to allow their child's participation in clinical studies.MethodsUtilizing social media, we disseminated an anonymous questionnaire to parents of pediatric IBD patients. The questionnaire encompassed queries about parental willingness for their child to partake in clinical studies, aspects of the disease deemed bothersome, and the sense of coherence scale (SOC).ResultsResponses were obtained from 101 parents, with a mean age of 46.4, of whom 82.2% were female. Concerns about potential future side effects of their child's medications surpassed worries about disease symptoms (80.04% vs. 73.47%). Linear regression analysis revealed that parents with lower SOC scores, limited medical care accessibility, and a higher age of the child at diagnosis, exhibited heightened concerns about the future impact of the disease on their child (p = 0.016, 0.003, and 0.045, respectively). While a majority rejected participation in studies involving new medications (54.5%), there was greater agreement for studies on nutritional therapies (84.2%) and complementary medicine (91.1%). Classification tree analysis indicated that women were more inclined to permit their child's participation in studies focusing on complementary medicine (adjusted p = 0.002).ConclusionParents of IBD patients express greater apprehension about potential side effects from IBD medications and display reluctance toward their child participating in clinical studies related to medications.

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“…However, this apparent underrepresentation may also be due to other social factors, including limited access to research opportunities, reduced invitations to participate, and specific attitudes towards genetic research, among others. This unbalanced participation biases research findings, limiting their generalizability to disenfranchised populations [ 8 , 9 ]. These challenges to equitable and informed enrollment are further complicated among persons at risk for being ADAD mutation carriers due to a lack of understanding about the causes of AD, understanding of the rationale behind the methodological designs in studies, and the understanding of the nature of genetic risk [ 10 , 11 ].…”

Section: Introductionmentioning

confidence: 99%

Attitudes about involvement in hypothetical clinical trial protocols in Mexican and Mexican-American at risk for autosomal dominant Alzheimer’s disease

et al. 2022

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Background The enrollment into clinical trials of persons at risk for autosomal dominant Alzheimer’s disease (ADAD) in whom the onset of disease can be accurately predicted facilitates the interpretation of outcomes (e.g., biomarkers, treatment efficacy). Attitudes toward involvement in such studies are biased by intrinsic cultural and social characteristics. Our objective was to study how demographic factors such as country of residence, age, sex, schooling, parenthood, and urbanization affect attitudes towards participation in hypothetical clinical trials in Mexican families at risk for ADAD living either in Mexico or in the United States. Methods Participants were 74 members of different families known to harbor an ADAD mutation living in Mexico (n = 50) or in the United States (n = 24). Participants were asked, in a written questionnaire, their interest in participating in four hypothetical clinical trial scenarios of increasing perceived invasiveness. The questionnaire then asked about their willingness should there be a 50% chance of being assigned to a placebo group. The influences of demographic variables on decisions were performed using Wilcoxon rank-sum for continuous variables and Fisher’s exact test for categorical variables. Results Participants who live in Mexico, who have or plan to have children, who do not attend or do not plan to attend school, and who live in rural areas gave more positive responses regarding their willingness to participate compared to those living in the U.S. The 50% chance of being in a placebo group increased the willingness to participate for family members living in Mexico. The main reason for participation was to help future generations, while the main reasons for refusal were not wanting to undergo genetic testing and consideration of adverse effects. Conclusions We found a higher level of willingness to participate in clinical trials among persons living in rural Mexico and our data suggest that altruism towards future generations is a major motivation, though this was balanced against concerns regarding side effects. Our results emphasize the importance of sharing information and assessing its understanding in potential participants with diverse backgrounds in the nature of ADAD and regarding the design of clinical trials prior to their enrollment in such studies.

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Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age

Cited by 4 publications

References 31 publications

Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study

Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study

Parental perspectives on pediatric inflammatory bowel disease: Unraveling concerns, and study participation willingness

Attitudes about involvement in hypothetical clinical trial protocols in Mexican and Mexican-American at risk for autosomal dominant Alzheimer’s disease

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