Moral concerns and the willingness to donate to a research biobank.
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ABSTRACT:
SUBMITTER: Tomlinson T
PROVIDER: S-EPMC4443895 | biostudies-literature | 2015 Jan
REPOSITORIES: biostudies-literature
Publications
Moral concerns and the willingness to donate to a research biobank.
Tomlinson Tom T De Vries Raymond R Ryan Kerry K Kim Hyungjin Myra HM Lehpamer Nicole N Kim Scott Y H SY
JAMA 20150101 4
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Project description:Although it has been well documented that poor health literacy is associated with limited participation in cancer clinical trials, studies assessing the relationships between cancer health literacy (CHL) and participation in research among diverse populations are lacking. In this study, we examined the relationship between CHL and willingness to participate in cancer research and/or donate bio-specimens (WPRDB) among African Americans, Latinos, and Whites. Participants completed the Cancer Health Literacy Test and the Multidimensional Cancer Literacy Questionnaire. Total-scale and subscale scores, frequencies, means, and distributions were computed. Analyses of variance, the Bonferroni procedure, and the Holm method were used to examine significant differences among groups. Cronbach's alphas estimated scales' internal consistency reliability. Significant interactions were found between race/ethnicity, gender, and CHL on WPRDB scales and subscale scores, even after education and age were taken into account. Our study confirms that CHL plays an important role that should be considered and researched further. The majority of participants were more willing to participate in non-invasive research studies (surveys, interviews, and training) or collection of bio-specimens (saliva, check cells, urine, and blood) and in studies led by their own healthcare providers, and local hospitals and universities. However, participants were less willing to participate in more-invasive studies requiring them to take medications, undergo medical procedures or donate skin/tissues. We conclude that addressing low levels of CHL and using community-based participatory approaches to address the lack of knowledge and trust about cancer research among diverse populations may increase not only their willingness to participate in research and donate bio-specimens, but may also have a positive effect on actual participation rates.
| S-EPMC6211072 | biostudies-literature
Project description:BackgroundWith passage of the HIV Organ Policy Equity (HOPE) Act, people living with HIV (PLWH) can donate organs to PLWH awaiting transplant. Understanding knowledge and attitudes regarding organ donation among PLWH in the United States is critical to implementing the HOPE Act.MethodsPLWH were surveyed regarding their knowledge, attitudes, and beliefs about organ donation and transplantation at an urban academic HIV clinic in Baltimore, MD, between August 2016 and October 2016. Responses were compared using Fisher exact and χ tests.ResultsAmong 114 survey respondents, median age was 55 years, 47.8% were female, and 91.2% were African American. Most were willing to be deceased donors (79.8%) or living donors (62.3%). Most (80.7%) were aware of the US organ shortage; however, only 24.6% knew about the HOPE Act, and only 21.1% were registered donors. Respondents who trusted the medical system or thought their organs would function adequately in recipients were more likely to be willing to be deceased donors (P < 0.001). Respondents who were concerned about surgery, worse health postdonation, or need for changes in HIV treatment because of donation were less likely to be willing to be living donors (P < 0.05 for all). Most believed that PLWH should be permitted to donate (90.4%) and that using HIV+ donor organs for transplant would reduce discrimination against PLWH (72.8%).ConclusionsMany of the PLWH surveyed expressed willingness to be organ donors. However, knowledge about the HOPE Act and donor registration was low, highlighting a need to increase outreach.
| S-EPMC6092203 | biostudies-literature
Project description:Although research involving biospecimens is essential in advancing cancer research, minorities, especially African-Americans, are underrepresented in such research. We conducted a mixed-method (qualitative focus groups among African-Americans and quantitative cross-sectional surveys) study on factors associated with biospecimen knowledge and donation intent in the medically underserved urban communities in Southeast and Southwest Washington, DC. Focus groups were conducted among 41 African-Americans and survey data was available from 302 community residents of different races/ethnicities using convenience sampling. We used logistic regression to model the association between biospecimen knowledge and donation intent with selected sociodemographic variables using survey data. Only 47 % of the participants had knowledge of the different types of biospecimens. In multivariate logistic regression models, male gender, African-American race, and low education levels were significantly associated with lower knowledge about biospecimens. Compared to Whites (79 %), fewer African-Americans (39 %) and Hispanics (57 %) had knowledge of biospecimens but the difference was significant for African-Americans only. Positive intent to donate biospecimens for research was observed among 36 % of the survey respondents. After multivariate adjustment, only biospecimen knowledge was associated with donation intent (odds ratio = 1.91, 95 % confidence interval 1.12, 3.27). Contrary to popular opinion, "mistrust of the medical community" was not the most commonly reported barrier for biospecimen donation among African-Americans. "Not knowing how biospecimens will be used" and "lack of knowledge of biospecimens" were the most common barriers. Our study highlights the importance of education on biospecimens among community residents to increase minority participation in biospecimen research.
| S-EPMC4159473 | biostudies-literature
Project description:PurposeResearch using gametes and embryos donated by reproductive and third-party donors contributed to substantial, albeit contentious achievements. The views of gamete donors and recipients on donation for research and the underpinning role of attitudes towards research have been seldom explored and are yet to be incorporated into ethical, legal, and regulatory landscapes. From a cultural standpoint, this study adapts and explores psychometric properties of the Portuguese version of the Research Attitudes Questionnaire (RAQ), and analyzes the willingness of gamete donors and recipients to donate gametes and embryos for research and its association with sociodemographic, reproductive characteristics, and attitudes towards research.MethodsBetween July 2017 and June 2018, 71 donors and 165 recipients completed a self-administered questionnaire at the Portuguese Public Bank of Gametes. Willingness to donate and attitudes towards research were measured with a 5-point Likert scale. RAQ psychometric characteristics were explored.ResultsTwo RAQ components were identified: "trustworthiness of research" and "critical perspective". Most participants were willing to donate gametes and embryos: donors more willing to donate gametes and male recipients more willing to donate gametes and embryos. Higher RAQ scores, indicating a more positive attitude towards research, were observed on the component "trustworthiness of research" among those willing to donate gametes and embryos and on the component "critical perspective" among those willing to donate embryos.ConclusionThese findings help foster inclusivity, diversity, and responsiveness of research and call for upstream engagement of male and female gamete donors and recipients, promoting a trustworthy, anticipatory, democratic, and people-centered approach to policies, regulations, and practices in human gamete and embryo research.
| S-EPMC9475016 | biostudies-literature
Project description:ObjectivesTo assess attitudes and willingness of parents of children with congenital heart disease (CHD) regarding donating biospecimens for future CHD research, and to identify factors associated with biospecimen donation.DesignFace-to-face cross-sectional survey data were analysed using logistic regression.SettingCardiothoracic Surgery Inpatient Department, Shanghai Children's Medical Centre.ParticipantsParents of children attending the cardiothoracic surgery inpatient department at Shanghai Children's Medical Center, 1 March-31 December 2016.Primary and secondary outcome measuresWillingness and motivation regarding donating children's biospecimens, and ethical and legal considerations concerning children's future willingness to donate.ResultsOf 550 parents, 508 completed the questionnaire (response rate=92.4%). Overall, 69.1% (n=351) were willing to donate their children's biospecimens for medical research. Multivariate analysis indicated higher education level (college/graduate degree: OR 2.435, 95% CI 1.221 to 4.857, p=0.012; high school: OR 1.827, 95% CI 1.190 to 2.804, p=0.006) and children's hospitalisation history (OR 1.581; 95% CI 1.069 to 2.338, p=0.022) were positively associated with willingness to donate. The most common motivation for donation was potential benefit to other children with CHD (81.2%, n=285). The main barriers to donation were physical discomfort to their children (52.3%, n=54) and concerns about personal privacy (47.1%, n=48). Most parents (86.0%, n=302) wanted to be informed of research results using their children's donated biospecimens, and 34.8% (n=177) believed that children aged 10-18 years had the right to consent independently to research participation.ConclusionsNearly 70% of the parents in this study were willing to donate their children's biospecimens for future CHD research. Parents' education level and children's hospitalisation history influenced willingness to donate. Most parents wanted to receive the research results related to their children's biospecimens.
| S-EPMC6196814 | biostudies-literature
Project description:Universal stool banks rely on, but face difficulties recruiting, community volunteers to donate stool for faecal microbiota transplantation (FMT) to effectively treat recurrent Clostridioides difficile. This study sought to identify determinants of community members' willingness to donate stool to guide donor recruitment. 397 Australian residents (52% male, 47% 21-30 years, 63% university educated) completed a survey to gauge willingness to donate stool, bowel habits, information needs, attitudes, barriers, and motives for donation. Most reported regular bowel movements (BMs; 90%), morning BMs (63%), BMs ≤5 minutes duration (67%), and some discomfort doing BMs in public restrooms (69%). Less than half were willing to donate stool in-centre (45% willing) or at home (48%). Important information needs identified by >80% were convenience and travel requirements associated with donation. Main barriers were logistics, capabilities to donate, disgust (e.g., donation process), and discomfort (e.g., privacy). The main motivator was altruism, with compensation secondary. Linear regression models identified less discomfort doing BMs in public restrooms (β = -0.15), understanding benefits to patients (β = 0.15), placing less importance on understanding the donation process (β = -0.13), and positive attitudes (β = 0.56) as determinants of willingness to donate in-centre. Understanding benefits to self (β = 0.11) and patients (β = 0.24), placing less importance on understanding the donation purpose (β = -0.19), and positive attitudes (β = 0.50) determined willingness to donate at home. Stool banks should consider donor's bowel habits, comfort donating in-centre, and information needs early in recruitment; and implement flexible logistics for potential donors who face time constraints and limited access to stool banks.
| S-EPMC7728237 | biostudies-literature
Project description:The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI concerns about profit seeking research and insurance risk assessment had the strongest impact, even greater than controversial issues such as reproductive research, regardless of political, religious, and most other characteristics of respondents. Based on the results, a schema of NWI types is proposed that could be used for further research and policy discussions.
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Project description:IntroductionKidney transplantation is the preferred treatment for end-stage renal disease (ESRD), offering a superior quality of life and extended survival compared to other renal replacement therapies. As the number of ESRD patients grows, so does the demand for organ transplants. The prevalence of ESRD is anticipated to escalate further due to the rising rates of diabetes mellitus (DM), hypertension (HTN), and obesity. Organ donation, particularly from living donors, remains the main source of transplants in the region, despite the notable underutilization of potential deceased donors' organs. The objective of this research is to assess the level of knowledge, attitudes, and willingness to donate kidneys among the general population, a pivotal step in addressing the organ shortage crisis.MethodsThis cross-sectional study was conducted in the Aseer region of Saudi Arabia using a previously validated questionnaire. The questionnaire collected demographic data and insights into general attitudes, knowledge, and beliefs about organ donation. Logistic regression was used to identify predictors of knowledge and willingness to donate.ResultsThe study involved 705 participants, predominantly young adults with a high level of education. Awareness of kidney donation was high, and knowledge about donation was broad, especially regarding religious permissibility and awareness of the donor registry. However, only 25% expressed willingness to donate their kidneys, and a 4% were already registered as donors. Furthermore, higher educational level was not associated with higher odds of knowledge or willingness to donate.ConclusionDespite the considerable awareness, actual donor registration rates were low, highlighting the necessity for targeted educational interventions and a deeper understanding of the cultural and socioeconomic barriers that exist.
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Project description:Attitude toward organ donation mobilizes donation behavior and makes transplant surgery possible. As future health professionals, medical students will be a relevant generating opinion group and will have an important role in the organ requesting process. The goals of this meta-analysis were to obtain polled rates of medical students who are in favor, against, or indecisive toward cadaveric organ donation in the studies conducted around the world, and to explore sociocultural variables influencing the willingness to donate. Electronic search and revision of references from previous literature allowed us to locate 57 studies fulfilling the inclusion criteria. Data extraction and risk of bias assessment were performed by two independent investigators. Pooled estimations were computed assuming a random-effects model. Despite the fact that willingness to donate was elevated in medical students, estimated rates in studies from different geographical areas and sociocultural backgrounds exhibited significant differences. The age and the grade of the students also influenced the rate of students in favor. Donation campaigns should take into account cultural factors, especially in countries where certain beliefs and values could hamper organ donation. Also, knowledge and skills related to organ donation and transplant should be acquired early in the medical curriculum when a negative attitude is less resistant to change.
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Project description: Not available
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