Willingness to participate in biomedical research

Rv, Katz; Kegeles, S. Stephen; Kressin, NR; Green, BL; Sheehan, James

doi:10.1016/s1047-2797(00)00153-8

Cited by 9 publications

(3 citation statements)

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“…As is true for other types of research, traditional barriers such as language and education level can also factor into the challenges of obtaining informed consent for WES/WGS studies. Previous studies have suggested a differential enthusiasm for participation in medical research among racial and ethnic groups [ 11 - 13 ], but further evaluation in the specific context of clinical genomic research is needed.…”

Section: Introductionmentioning

confidence: 99%

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

et al. 2014

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BackgroundEffectively educating families about the risks and benefits of genomic tests such as whole exome sequencing (WES) offers numerous challenges, including the complexity of test results and potential loss of privacy. Research on best practices for obtaining informed consent (IC) in a variety of clinical settings is needed. The BASIC3 study of clinical tumor and germline WES in an ethnically diverse cohort of newly diagnosed pediatric cancer patients offers the opportunity to study the IC process in the setting of critical illness. We report on our experience for the first 100 families enrolled, including study participation rates, reasons for declining enrollment, assessment of clinical and demographic factors that might impact study enrollment, and preferences of parents for participation in optional genomics study procedures.MethodsA specifically trained IC team offered study enrollment to parents of eligible children for procedures including clinical tumor and germline WES with results deposited in the medical record and disclosure of both diagnostic and incidental results to the family. Optional study procedures were also offered, such as receiving recessive carrier status and deposition of data into research databases. Stated reasons for declining participation were recorded. Clinical and demographic data were collected and comparisons made between enrolled and non-enrolled patients.ResultsOver 15 months, 100 of 121 (83%) eligible families elected to enroll in the study. No significant differences in enrollment were detected based on factors such as race, ethnicity, use of Spanish interpreters and Spanish consent forms, and tumor features (central nervous system versus non-central nervous system, availability of tumor for WES). The most common reason provided for declining enrollment (10% of families) was being overwhelmed by the new cancer diagnosis. Risks specific to clinical genomics, such as privacy concerns, were less commonly reported (5.5%). More than 85% of parents consented to each of the optional study procedures.ConclusionsAn IC process was developed that utilizes a specialized IC team, active communication with the oncology team, and an emphasis on scheduling flexibility. Most parents were willing to participate in a clinical germline and tumor WES study as well as optional procedures such as genomic data sharing independent of race, ethnicity or language spoken.Electronic supplementary materialThe online version of this article (doi:10.1186/s13073-014-0069-3) contains supplementary material, which is available to authorized users.

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Section: Introductionmentioning

confidence: 99%

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

et al. 2014

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“…10 It is not surprising then that given such attitudes, African Americans are unlikely to participate in biomedical research. 6,8,12 Reasons included a general distrust of the investigators, which in at least some instances was based on incorrect information regarding the consent process, and the fear of being used as "guinea pigs" without any clear benefits for themselves or their families. 8 Many individuals expressed a belief that the medical community values African American lives less, citing Tuskegee and other examples of medical "abuse" of African Americans.…”

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Attitudes of African American premedical students toward genetic testing and screening

Laskey

Williams

Pierre-Louis

et al. 2003

Genetics in Medicine

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Purpose: Genetic research is progressing at a rapid rate. While most view genetic advances favorably, concerns regarding eugenics and discrimination based on genetic test results have been raised. These concerns have been found among all groups studied; however, they have particular relevance for members of the African American community. Studies have shown that because of a long history of negative experiences, African Americans have a general mistrust of the medical establishment. It is unclear whether these negative attitudes encompass genetic advances. Because there is little empiric data in the literature, it is not known whether African Americans have a positive view of genetic advances or whether they have the same level of mistrust as is seen in their attitudes toward other forms of biomedical research. Methods: This study was conducted as an initial effort to examine the attitudes of African Americans toward recent genetic advances and, specifically, genetic testing. A cohort of 97 college-age minority students, including 78 African Americans, participating in the Health Career Enhancement for Minorities Program (HCEM) at Case Western Reserve University were surveyed. Surveys were made available before and after the summer long course, which included five lectures on basic genetic principles and medical genetics. Results: Both African American students and other minority students initially (questionnaire prior to HCEM course) had an overall positive view of genetic testing. The vast majority supported genetic testing for preventive care (95%) and presymptomatic detection of disease (88%) and agreed that it should be easily available (83%). However, several concerns were expressed as well, including fears about discrimination (68%), privacy (68%), that abortions will become more common (51%), and eugenics (37%). It is interesting that in the postcourse questionnaire, the percentages of positive views remained similar to those of the precourse survey, but the number of respondents expressing concerns increased. Discussion: These results suggest that the minority students surveyed view many aspects of genetic testing and other advances favorably. However, these students expressed concerns about discrimination, privacy, and eugenics. These concerns were increased, not lessened, by exposure to genetics education. One possible explanation for this observation is that the students had a greater understanding of the issues regarding genetic testing after the HCEM lectures and discussion. Of note, there was a greater negative response toward genetic screening programs among the African American students compared with the non-African American minority students. This suggests that the negative attitudes of African Americans toward biomedical research do extend to some aspects of genetics and that educational programs must be designed and Key Words: African Americans, attitudes, genetic testingMedicine is in the midst of a genetic revolution, as new disease-related genes are being identified at a rapid rate. These...

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“…As is true for other types of research, traditional barriers such as language and education level can also factor into the challenges of obtaining informed consent for WES/ WGS studies. Previous studies have suggested a differential enthusiasm for participation in medical research among racial and ethnic groups [11][12][13], but further evaluation in the specific context of clinical genomic research is needed.…”

Section: Introductionmentioning

confidence: 99%

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

et al. 2014

View full text Add to dashboard Cite

Background: Effectively educating families about the risks and benefits of genomic tests such as whole exome sequencing (WES) offers numerous challenges, including the complexity of test results and potential loss of privacy. Research on best practices for obtaining informed consent (IC) in a variety of clinical settings is needed. The BASIC3 study of clinical tumor and germline WES in an ethnically diverse cohort of newly diagnosed pediatric cancer patients offers the opportunity to study the IC process in the setting of critical illness. We report on our experience for the first 100 families enrolled, including study participation rates, reasons for declining enrollment, assessment of clinical and demographic factors that might impact study enrollment, and preferences of parents for participation in optional genomics study procedures. Methods: A specifically trained IC team offered study enrollment to parents of eligible children for procedures including clinical tumor and germline WES with results deposited in the medical record and disclosure of both diagnostic and incidental results to the family. Optional study procedures were also offered, such as receiving recessive carrier status and deposition of data into research databases. Stated reasons for declining participation were recorded. Clinical and demographic data were collected and comparisons made between enrolled and non-enrolled patients. Results: Over 15 months, 100 of 121 (83%) eligible families elected to enroll in the study. No significant differences in enrollment were detected based on factors such as race, ethnicity, use of Spanish interpreters and Spanish consent forms, and tumor features (central nervous system versus non-central nervous system, availability of tumor for WES). The most common reason provided for declining enrollment (10% of families) was being overwhelmed by the new cancer diagnosis. Risks specific to clinical genomics, such as privacy concerns, were less commonly reported (5.5%). More than 85% of parents consented to each of the optional study procedures. Conclusions: An IC process was developed that utilizes a specialized IC team, active communication with the oncology team, and an emphasis on scheduling flexibility. Most parents were willing to participate in a clinical germline and tumor WES study as well as optional procedures such as genomic data sharing independent of race, ethnicity or language spoken.

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Willingness to participate in biomedical research

Cited by 9 publications

References 0 publications

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

Attitudes of African American premedical students toward genetic testing and screening

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

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