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1.  Tissue Banking: Relationship with Blood Donor and Organ Donor Card Status 
ISRN Urology  2012;2012:475729.
Understanding the relationships among altruistic health acts may serve to aid therapeutic research advances. In this paper, we report on the links between two such behaviours—donating blood and carrying an organ donor card—and willingness to donate urological tissue to a tissue bank. Reasons for the differential willingness to do so are examined in this paper. A systematic sample of 259 new and returning attendees at a tertiary urology referral clinic in Ireland completed a self-report questionnaire in an outpatient setting. In addition to demographic details, details of known diagnosis of malignancy and family history of cancer; attitudes to tissue donation for research purposes were gauged using a 5-point Likert scale. Both blood donors and organ donor card carriers were more likely to be willing to donate tissue for research purposes. Blood donors were more likely want to know their overall results in comparison to nonblood donors and want their samples to be used for nonprofit research. Our hypothesis that being a blood donor would be a better predictor to donate urological tissue than being an organ donor card carrier borne out by the trends reported above.
doi:10.5402/2012/475729
PMCID: PMC3329732  PMID: 22567418
2.  THE ROLE OF RACE AND TRUST IN TISSUE/BLOOD DONATION FOR GENETIC RESEARCH 
Background
Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens. Some have suggested recruitment of prior research participants to address these barriers. We present data from a genetic epidemiology study with a request for blood and/or saliva specimens to: 1) measure willingness to donate tissue/blood samples, 2) identify demographic, trust, and other factors associated with willingness to donate samples, and 3) measure willingness to participate in future genetic research.
Methods
We surveyed participants in the North Carolina Colorectal Cancer Study (NCCCS), which included biologic sample collection from consenting participants. Participants were later asked about sample provision; trust in researchers, and future research participation.
Results
African Americans were less likely to give a blood sample when compared to whites (21% vs. 13%, p<0.05). After controlling for “trust,” this difference was no longer statistically significant (17% vs. 13%, p=0.27). Those who had given samples were more likely to express willingness to participate in future research.
Conclusion
Despite prior participation in a genetic epidemiology study, factors associated with provision of tissue samples reflected many previously identified demographic factors (race, trust). Interventions to improve and demonstrate the trustworthiness of the research team as well as recruitment of subjects with a record of sample donation might enhance future study participation.
doi:10.1097/GIM.0b013e3181cd6689
PMCID: PMC3114600  PMID: 20098329
Trust; Research Participation; Biologic samples; Genetics
3.  Knowledge and beliefs on corneal donation in Singapore adults 
Aim: To assess the knowledge and willingness of Singapore adults towards corneal donation.
Methods: The study population consists of a cluster random sample of the population living in Bedok North (an area in the eastern part of Singapore). The study population comprised residents aged 21–65 years living in 675 randomly sampled housing units. The participation rate was 65.9% (544/825). All participants were interviewed face to face with a questionnaire formulated according to the modified Horton and Horton model. Knowledge, values, attitudes, and spiritual beliefs of participants were assessed to evaluate their willingness to donate their corneas.
Results: 67.0% of participants were willing to donate their corneas. Ethnicity (Chinese) and religion (Christians, Hindus, or those with no religion) were associated with increased willingness to donate corneas. Greater knowledge and increased altruistic values were also associated with increased willingness to donate corneas.
Conclusion: A proportion of participants were willing to donate their corneas. Awareness of corneal donation is high but specific knowledge should be further increased among adults.
doi:10.1136/bjo.2004.057372
PMCID: PMC1772726  PMID: 15965162
knowledge; beliefs; corneal donation; Singapore; survey
4.  Patients’ Willingness to Participate in a Breast Cancer Biobank at Screening Mammogram 
Purpose
To characterize patients’ willingness to donate a biospecimen for future research as part of a breast cancer-related biobank involving a general screening population.
Materials and Methods
We performed a prospective cross-sectional study of 4,217 women aged 21 to 89 years presenting to our facilities for screening mammogram between December 2010 and October 2011. This HIPAA-compliant study was approved by our institutional review board. We collected data on patients’ interest in and actual donation of a biospecimen, motivators and barriers to donating, demographic information, and personal breast cancer risk factors. A multivariate logistic regression analysis was performed to identify patient-level characteristics associated with an increased likelihood to donate.
Results
Mean patient age was 57.8 years (SD 11.1 years). While 66.0% (2785/4217) of patients were willing to donate blood or saliva during their visit, only 56.4% (2378/4217) actually donated. Women with a college education (OR=1.27, p=0.003), older age (OR=1.02, p<0.001), previous breast biopsy (OR=1.23, p=0.012), family history of breast cancer (OR=1.23, p=0.004), or a comorbidity (OR=1.22, p=0.014) were more likely to donate. Asian-American women were significantly less likely to donate (OR=0.74, p=0.005). The major reason for donating was to help all future patients (42.3%) and the major reason for declining donation was privacy concerns (22.3%).
Conclusion
A large proportion of women participating in a breast cancer screening registry are willing to donate blood or saliva to a biobank. Among minority participants, Asian-American women are less likely to donate and further qualitative research is required to identify novel active recruitment strategies to ensure their involvement.
doi:10.1007/s10549-012-2324-x
PMCID: PMC3676182  PMID: 23129174
biospecimen; biobank; breast cancer; screening; patient willingness
5.  Assessing racial and ethnic differences in medical student knowledge, attitudes and behaviors regarding organ donation. 
OBJECTIVES: Previous studies have demonstrated that informed healthcare providers could increase patient willingness to donate. We assessed medical students' knowledge and attitudes to determine their preparedness to encourage organ donation. METHODS: 500 first- and second-year students attending one of three Ohio medical schools completed the 41-item questionnaire (93% cooperation rate). The questions evaluated students' donation knowledge, training, exposure and perceived barriers as well as their willingness to donate. RESULTS: On univariate analysis, Asians (OR: 0.5, 95% CI: 0.2-0.9) and blacks (OR: 0.1, 95% CI: 0.1-0.2) were less willing than whites to donate. On multivariate analysis, race was no longer significantly associated with willingness to donate,Three factors were associated with a decreased donation willingness: wanting burial with organs intact (OR: 0.1, 95%CI: 0.1-0.2), having personal conflicts with donation (OR: 0.2, 95%Cl: 0.1-0.6), and concern that carrying a donor card will lead to insufficient medical care (OR: 0.2, 95% Cl: 0.1-0.4). Of note, knowledge was not associated with willingness to donate. CONCLUSION: In this medical student cohort, minorities were less willing to donate. Three factors were associated with a decreased willingness to donate regardless of student race. Addressing these barriers may increase student donation willingness, and physicians should encourage donation discussions with their patients.
PMCID: PMC2569425  PMID: 17366949
6.  Consent for Use of Clinical Leftover Biosample: A Survey among Chinese Patients and the General Public 
PLoS ONE  2012;7(4):e36050.
Background
Storage of leftover biosamples generates rich biobanks for future studies, saving time and money and limiting physical impact to sample donors.
Objective
To investigate the attitudes of Chinese patients and the general public on providing consent for storage and use of leftover biosamples.
Design, Setting and Participants
Cross-sectional surveys were conducted among randomly selected patients admitted to a Shanghai city hospital (n = 648) and members of the general public (n = 492) from May 2010 to July 2010.
Main Outcome Measures
Face-to-face interviews collected respondents-report of their willingness to donate residual biosample, trust in medical institutions, motivation for donation, concerns of donated sample use, expectations for research results return, and so on.
Results
The response rate was 83.0%. Of the respondents, 89.1% stated that they completely understood or understood most of questions. Willingness to donate residual sample was stated by 64.7%, of which 16.7% desired the option to withdraw their donations anytime afterwards. Only 42.3% of respondents stated they “trust" or “strongly trust" medical institutions, the attitude of trusting or strongly trusting medical institutions were significantly associated with willingness to donate in the general public group.(p<0.05) The overall assent rate for future research without specific consents was also low (12.1%). Hepatitis B virus carriers were significantly less willing than non-carriers to donate biosamples (32.1% vs. 64.7%, p<0.001).
Conclusions
Low levels of public trust in medical institutions become serious obstacle for biosample donation and biobanking in China. Efforts to increase public understanding of human medical research and biosample usage and trust in the ethical purposes of biobanking are urgently needed. These efforts will be greatly advanced by the impending legislation on biobanking procedures and intent, and our results may help guide the structure of such law.
doi:10.1371/journal.pone.0036050
PMCID: PMC3338618  PMID: 22558323
7.  Eye donation – Awareness and willingness among attendants of patients at various clinics in Melaka, Malaysia 
Aim:
Corneal blindness accounts for 3.42% of blindness in Malaysia; the rate of eye donation is low. The aim of the study was to assess the awareness about eye donation and willingness to donate eyes among attendants of patients at various clinics in Melaka, Malaysia.
Materials and Methods:
This observational study was conducted on attendants who accompanied patients (n = 400) visiting various outpatient departments of the General Hospital and two peripheral clinics in Melaka between August and October 2007. The participants answered a questionnaire (Malay and English versions) which included demographic profile, awareness of eye donation, knowledge regarding facts of eye donation, and willingness to donate eyes. Univariate and multivariate logistic regression was performed at 5% level of significance.
Results:
Awareness of eye donation was observed in 276 (69%) participants. Multivariate analysis showed that awareness was more among females when compared to males (P = 0.009). Of the 276 participants who were aware of eye donation, only 34.42% were willing to donate eyes. Willingness was more among the Indian race (P = 0.02) and males (P = 0.02). Educational status did not influence the willingness to donate eyes.
Conclusions:
Although majority of participants were aware of eye donation, willingness to donate eyes was poor.
doi:10.4103/0301-4738.73727
PMCID: PMC3032241  PMID: 21157071
Awareness; eye donation; willingness; Malaysia
8.  Participant Characteristics That Influence Consent for Genetic Research in a Population-Based Survey: The Baltimore Epidemiologic Catchment Area Follow-Up 
Community genetics  2008;11(3):171-178.
Background
The purpose of this study is to investigate the sociodemographic and health characteristics associated with the willingness to donate a DNA sample, and consent to testing and long-term storage of that sample, among participants in a longitudinal community-based survey.
Sample
Eighty-three percent of the 1,071 participants interviewed in 2004/5 agreed to donate a biological specimen (blood or buccal).
Results
Age was consistently inversely associated with the willingness to allow genetic testing (OR 0.97; p < 0.05), but was unrelated to the willingness to donate or allow storage. There was no association between race and the consent to donate a specimen, but Blacks were less likely to consent to DNA storage for future research as compared with members of other racial groups (OR 0.50; p < 0.01). Four conditions were listed on the consent form as relevant to the genes targeted for assay. Participants with a family history of 1 or more of these conditions were more likely to donate than those without (OR 1.68; p < 0.01). Participants with a personal history of 1 of the 4 conditions listed were not more or less likely to donate, allow testing or allow storage than respondents without such a history.
Conclusions
Sociodemographic characteristics were unrelated to the willingness to donate a biological sample. Age, but not race, sex or education, was related to consent to genetic testing. Race, but not age, sex or education, was related to consent to storage. A family history of health conditions listed as relevant to the assays being requested was related to the willingness to donate. Factors that affect the willingness to donate a biological sample in an epidemiologic study are not the same as those associated with the willingness to allow genetic testing or storage of that sample for unspecified future research
doi:10.1159/000113880
PMCID: PMC2853229  PMID: 18376114
Genetic research; Blood donation; DNA storage
9.  Biobanking for research: a survey of patient population attitudes and understanding 
Journal of Community Genetics  2013;4(4):445-450.
Population-based biobanks are a critical resource for genetic research. It is important to know what potential participants understand about the risks and benefits of providing samples in order to ensure adequate informed consent. Kaiser Permanente Colorado (KPCO) is currently planning a biobank where adult members would be asked to contribute an additional tube of blood during a routine blood draw. Adult KPCO members in clinic waiting rooms were asked to read an informational brochure and informed consent form. Respondents then completed a survey to evaluate their understanding of the materials, willingness to provide a blood sample to a biobank, and facilitators and barriers to participation. Two hundred three members participated in the survey, of whom 69 % indicated willingness to contribute to a biobank. Nearly all understood that they would not be paid for any products resulting from the use of their blood and would not receive results from their samples (91 and 84 %, respectively). Seventy-four percent would donate a sample because, “it is important to contribute to research,” and over half the participants (56 %) said they had no concerns about contributing to a biobank. Of those with concerns, 35 % said information security was a reason. In multivariate models, older age and trust in KPCO were significant predictors of willingness to participate (p = 0.03 and p < 0.0001, respectively). Data from this survey indicate an overall willingness to participate in a biobank, provide possible barriers to participation, and identify ways to improve informational materials to ensure adequate informed consent.
doi:10.1007/s12687-013-0146-0
PMCID: PMC3773315  PMID: 23605056
Biobanks; Genetics; Public attitudes; Participation; Understanding; Consent
10.  The Infectious Diseases BioBank at King's College London: archiving samples from patients infected with HIV to facilitate translational research 
Retrovirology  2009;6:98.
The King's College London (KCL) Infectious Diseases BioBank opened in 2007 and collects peripheral venous blood (PVB) from individuals infected with pathogens including human immunodeficiency virus (HIV). PVBs are fractionated into plasmas, lymphocytes and DNA and are then frozen. All donations are from subjects who have given 'open consent' so samples can be used for virtually any type of biomedical research. The HIV component of the BioBank contains samples from over 400 donations from 138 HIV+ patients. Thus, the KCL Infectious Diseases BioBank - together with establishments such as the Spanish HIV BioBank - is likely to expedite translational research into this infection.
doi:10.1186/1742-4690-6-98
PMCID: PMC2779177  PMID: 19886990
11.  Reasons for Unwillingness of Libyans to Donate Organs after Death 
The Libyan Journal of Medicine  2009;4(3):110-113.
Introduction
Organ transplantation in Libya depends exclusively on donations from live relatives. This limitation increases mortality and prolongs the patients’ suffering and waiting time.
Objectives
The aims of this study were to explore willingness to donate organs after death and to identify the reasons for refusal.
Methods
A population-based crosssectional study was conducted from April to July 2008 on a cluster sample of 1652 persons (58% males and 42% females). The questionnaire included demographic information and mainly enquired about willingness to donate organs after death and the reasons for refusal when applicable.
Results
About one-third (29.7%) of participants were in favor of donating their organs after death, 60.1% refused and 10.2% were undecided. Willingness was significantly associated with being male, younger age, having a college or graduate degree, and being single (P <0.05 for all). Lack of adequate knowledge about the importance of deceased organ donation and uncertainty about its religious implications were the most predominant reasons for refusal (43.8% and 39.5%, respectively). Other reasons included ethical concerns about retrieving organs from dead bodies (37.9%), preference for being buried intact (28%), and uneasiness about the idea of cadaver manipulation (33%).
Conclusion
There were a considerable resistance to deceased organ donation, especially among females, those of older age, married people, and those with a low education level. The barriers to cadaveric donations were lack of adequate knowledge, unease about body manipulation, and concerns about religious implications. Public educational campaigns should be coordinated with religious leadership.
doi:10.4176/090405
PMCID: PMC3066732  PMID: 21483525
Reasons; Unwillingness; Libyan; Deceased organs; Donation
12.  Public views on the donation and use of human biological samples in biomedical research: a mixed methods study 
BMJ Open  2013;3(8):e003056.
Objective
A mixed methods study exploring the UK general public's willingness to donate human biosamples (HBSs) for biomedical research.
Setting
Cross-sectional focus groups followed by an online survey.
Participants
Twelve focus groups (81 participants) selectively sampled to reflect a range of demographic groups; 1110 survey responders recruited through a stratified sampling method with quotas set on sex, age, geographical location, socioeconomic group and ethnicity.
Main outcome measures
(1) Identify participants’ willingness to donate HBSs for biomedical research, (2) explore acceptability towards donating different types of HBSs in various settings and (3) explore preferences regarding use and access to HBSs.
Results
87% of survey participants thought donation of HBSs was important and 75% wanted to be asked to donate in general. Responders who self-reported having some or good knowledge of the medical research process were significantly more likely to want to donate (p<0.001). Reasons why focus group participants saw donation as important included: it was a good way of reciprocating for the medical treatment received; it was an important way of developing drugs and treatments; residual tissue would otherwise go to waste and they or their family members might benefit. The most controversial types of HBSs to donate included: brain post mortem (29% would donate), eyes post mortem (35%), embryos (44%), spare eggs (48%) and sperm (58%). Regarding the use of samples, there were concerns over animal research (34%), research conducted outside the UK (35%), and research conducted by pharmaceutical companies (56%), although education and discussion were found to alleviate such concerns.
Conclusions
There is a high level of public support and willingness to donate HBSs for biomedical research. Underlying concerns exist regarding the use of certain types of HBSs and conditions under which they are used. Improved education and more controlled forms of consent for sensitive samples may mitigate such concerns.
doi:10.1136/bmjopen-2013-003056
PMCID: PMC3740256  PMID: 23929915
PUBLIC HEALTH; GENETICS; PATHOLOGY
13.  Biobanking research on oncological residual material: a framework between the rights of the individual and the interest of society 
BMC Medical Ethics  2013;14:17.
Background
The tissue biobanking of specific biological residual materials, which constitutes a useful resource for medical/scientific research, has raised some ethical issues, such as the need to define which kind of consent is applicable for biological residual materials biobanks.
Discussion
Biobank research cannot be conducted without considering arguments for obtaining the donors’ consent: in this paper we discuss to what extent consent in biobank research on oncological residual materials has to be required, and what type of consent would be appropriate in this context, considering the ethical principles of donation, solidarity, protection of the donors’ rights and the requirements of scientific progress. Regarding the relationship between informed consent and tissue collection, storage and research, we have focused on two possible choices related to the treatment of data and samples in the biobank: irreversible and reversible anonymization of the samples, distinguishing between biobank research on residual materials for which obtaining consent is necessary and justified, and biobank research for which it is not. The procedures involve different approaches and possible solutions that we will seek to define. The consent for clinical research reported in the Helsinki Declaration regards research involving human beings and for this reason it is subordinate to specific and detailed information on the research projects.
Summary
An important ethical aspect in regard to the role of Biobanks is encouraging sample donation. For donors, seeing human samples being kept rather than discarded, and seeing them become useful for research highlights the importance of the human body and improves the attitude towards donation. This process might also facilitate the giving of informed consent more willingly, and with greater trust.
doi:10.1186/1472-6939-14-17
PMCID: PMC3616854  PMID: 23547565
Biobanks; Consent; Oncological residual material; Cancer biobanks; Residual materials biobanks; Informed consent; Ethics; Research; Solidarity
14.  How Representative Are Research Tissue Biobanks of the Local Populations? Experience of the Infectious Diseases Biobank at King's College, London, UK 
Biopreservation and Biobanking  2011;9(3):287-288.
Biobanks have a primary responsibility to collect tissues that are a true reflection of their local population and thereby promote translational research, which is applicable to the community. The Infectious Diseases BioBank (IDB) at King's College London is located in the southeast of the city, an area that is ethnically diverse. Transplantation programs have frequently reported a low rate of donation among some ethnic minorities. To determine whether patients who volunteered peripheral venous blood samples to the IDB were representative of the local community, we compared local government demographic data to characteristics of patients who have donated to the IDB. There was a good match between these statistics, indicating that the IDB's volunteer population of human immunodeficiency virus patients was similar to local demographics.
doi:10.1089/bio.2011.0015
PMCID: PMC3178420  PMID: 21977243
15.  The relationship between motivation to volunteer, gender, cultural mistrust, and willingness to donate organs among Blacks. 
The relationship between motivation to volunteer, gender, cultural mistrust, and the willingness of blacks to donate their organs, as well as the organs of relatives, was explored. Participants consisted of 107 black students attending a university located in the southwest. All participants were given the Volunteer Functions Inventory (VFI), Cultural Mistrust Inventory (CMI), Organ Donation Questionnaire (ODQ), and a background information questionnaire. It was found that individuals with low scores on the VFI and high scores on the CMI were less willing to consent to donating their organs. Also, females and individuals with high CMI scores were less willing to permit the recovery of organs from relatives. Some theoretical and applied implications for mental health professionals are suggested.
PMCID: PMC2594755  PMID: 14746354
16.  Donation Intentions for Cancer Genetics Research Among African Americans 
Aims: Scientific agencies rely on individuals to donate their DNA to support research on chronic conditions that disproportionately affect African Americans; however, donation is variable in this population. The purpose of this study was to identify sociodemographic characteristics, health care variables, and cultural values having significant independent associations with intentions to donate blood or saliva samples for cancer genetics research among African American adults. Method: Cross-sectional survey of donation intentions. Results: The majority of respondents (73%) were willing to donate a biological sample for cancer genetics research. The results of the multivariate regression model found that respondents who received care at a facility other than a doctor's office (e.g., community center) were about five times more likely to be willing to donate a sample for cancer genetics research (odds ratio [OR]=5.28, 95% confidence interval [CI]=1.16–24.12, p=0.03); whereas, greater levels of religiosity (OR=0.09, 95% CI=0.01–0.75, p=0.02) and present temporal orientation (OR=0.23, 95% CI=0.06–0.79, p=0.02) were associated with a lower likelihood of donating a sample. Conclusion: Efforts to enhance donation of biological samples for cancer genetics research may need to target diverse clinical sites for recruitment. Additionally, recruitment materials may need to address cultural values related to religiosity and present temporal orientation.
doi:10.1089/gtmb.2011.0119
PMCID: PMC3326272  PMID: 22224593
17.  Ethical and legal considerations regarding the ownership and commercial use of human biological materials and their derivatives 
This article considers some of the ethical and legal issues relating to the ownership and use – including for commercial purposes – of biological material and products derived from humans. The discussion is divided into three parts: after first examining the general notion of ownership, it moves to the particular case of possible commercial use, and finally reflects on the case in point in the light of the preceding considerations. Units of cord blood donated altruistically for transplantation and which are found unsuitable for storage and transplantation, or which become unsuitable while stored in biobanks, are taken as an example. These cord-blood units can be discarded together with other biological waste, or they can be used for research or the development of blood-derived products such as platelet gel. Several ethical questions (eg, informed consent, property, distribution of profits, and others) arise from these circumstances. In this regard, some criteria and limits to use are proposed.
doi:10.2147/JBM.S36134
PMCID: PMC3440234  PMID: 22977316
bioethics; biological specimen banks; cord-blood stem cell transplantation; ethics; informed consent; legislation
18.  Regulated Payments for Living Kidney Donation: An Empirical Assessment of the Ethical Concerns 
Annals of internal medicine  2010;152(6):358-365.
Background
Although regulated payments to encourage living kidney donation could reduce morbidity and mortality among patients waiting for a kidney transplant, doing so raises several ethical concerns.
Objective
To determine the extent to which the 3 main concerns with paying kidney donors might manifest if a regulated market were created.
Design
Cross-sectional study of participants’ willingness to donate a kidney in 12 scenarios.
Setting
Regional rail and urban trolley lines in Philadelphia County, Philadelphia, Pennsylvania.
Participants
Of 550 potential participants, 409 completed the questionnaire (response rate, 74.4%); 342 of these participants were medically eligible to donate.
Intervention
Across scenarios, researchers experimentally manipulated the amount of money that participants would receive, the participants’ risk for subsequently developing kidney failure themselves, and who would receive the donated kidney.
Measurements
The researchers determined whether payment represents an undue inducement by evaluating participants’ sensitivity to risk in relation to the payment offered or an unjust inducement by evaluating participants’ sensitivity to payment as a function of their annual income. The researchers also evaluated whether introducing payment would hinder altruistic donations by comparing participants’ willingness to donate altruistically before versus after the introduction of payments.
Results
Generalized estimating equation models revealed that participants’ willingness to donate increased significantly as their risk for kidney failure decreased, as the payment offered increased, and when the kidney recipient was a family member rather than a patient on a public waiting list (P < 0.001 for each). No statistical interactions were identified between payment and risk (odds ratio, 1.00 [95% CI, 0.96 to 1.03]) or between payment and income (odds ratio, 1.01 [CI, 0.99 to 1.03]). The proximity of these estimates to 1.0 and narrowness of the CIs suggest that payment is neither an undue nor an unjust inducement, respectively. Alerting participants to the possibility of payment did not alter their willingness to donate for altruistic reasons (P = 0.40).
Limitation
Choices revealed in hypothetical scenarios may not reflect real-world behaviors.
Conclusion
Theoretical concerns about paying persons for living kidney donation are not corroborated by empirical evidence. A real-world test of regulated payments for kidney donation is needed to definitively show whether payment provides a viable and ethical method to increase the supply of kidneys available for transplantation.
Primary Funding Source
None.
doi:10.1059/0003-4819-152-6-201003160-00005
PMCID: PMC2865248  PMID: 20231566
19.  Who is willing to take the risk? Assessing the readiness for living liver donation in the general German population 
Journal of Medical Ethics  2006;32(7):389-394.
Background
Shortage of donor organs is one of the major problems for liver transplant programmes. Living liver donation is a possible alternative, which could increase the amount of donor organs available in the short term.
Objective
To assess the attitude towards living organ donation in the general population to have an overview of the overall attitude within Germany.
Methods
A representative quota of people was evaluated by a mail questionnaire (n = 250). This questionnaire had 24 questions assessing the willingness to be a living liver donor for different potential recipients. Factors for and against living liver donation were assessed.
Results
Donating a part of the liver was almost as accepted as donating a kidney. The readiness to donate was highest when participants were asked to donate for children. In an urgent life‐threatening situation the will to donate was especially high, whereas it was lower in the case of recipient substance misuse. More women than men expressed a higher disposition to donate for their children. Sex, religion, state of health and age of the donor, however, did not influence other questions on the readiness to consider living organ donation. The will for postmortem organ donation positively correlated with the will to be a living organ donor.
Conclusions
The motivation in different demographic subgroups to participate in living liver transplantation is described. Differences in donation readiness resulting from the situation of every donor and recipient are thoroughly outlined. The acceptance for a living liver donation was found to be high – and comparable to that of living kidney donation.
doi:10.1136/jme.2005.013474
PMCID: PMC2564484  PMID: 16816037
20.  Analyzing sociodemographic factors amongst blood donors 
Introduction:
Blood transfusion is a fundamental and requisite part of any National Health Service for optimum management of emergency conditions like severe trauma shock and resuscitation with the optimum stock of its different components. The objective of the present study was to analyze the factors of knowledge of prospective blood donors that may influence their perception and awareness about blood donation.
Materials and Methods:
This population-based cross-sectional study was conducted at Gangtok in the state of Sikkim, India, on 300 subjects of the adult population selected by two-stage cluster sampling. The main outcome variables were the socioeconomic and demographic variables of knowledge of blood donation. By interview technique, using the pre-tested structured close-ended questionnaire, the principal investigator collected the data.
Results:
In our study population, 46% of the study population was found to have a high knowledge score. The knowledge about blood donation was found to be statistically significant with the occupational status and the education levels, both in the bivariate and in the multivariate analyses. Knowledge about blood donation was not significantly related to age, sex, marital status, religion, community status and per capita monthly family income.
Conclusion:
The study suggested that the perceptions toward voluntary blood donation could be influenced to a large extent by sociodemographic variables of knowledge among the general population.
doi:10.4103/0974-2700.58667
PMCID: PMC2823138  PMID: 20165717
Education; occupation; religion
21.  Attitudes toward kidney donation. 
The Renal Unit of Obafemi Awolowo University Teaching Hospital Ile-Ife in Southwest Nigeria intends commencing a kidney transplantation program. This cross-sectional study aimed at examining the willingness of Nigerians to be living-related kidney donors. Three hundred and sixteen Nigerians (96 first-degree relatives of end-stage renal disease patients, 69 rural dwellers and 151 health workers) were interviewed regarding their willingness to donate kidneys using an interview schedule designed to elicit socio-demographic information, knowledge about kidney transplantation and attitude toward kidney donation. Sixty-two percent of health workers, 52.1% of the patients' relatives and 27.1% of rural dwellers expressed willingness to donate. Higher proportions of health workers and patients' relatives--compared with the rural dwellers--were willing to donate a kidney to their children, full-siblings and parents (P<0.05). The level of awareness about kidney transplantation was highest among health workers and least among rural dwellers (P<0.001). Altruism was the primary motivation for those willing to donate a kidney. The most important reason for refusal to donate was fear of adverse health consequences. Among the rural dwellers, never-married persons were more willing than the married to donate (P<0.05). Programs aimed at increasing awareness about the safety of kidney donation, reducing adverse beliefs about kidney donation, and encouraging altruistic tendencies will increase the availability of kidney donors.
PMCID: PMC2594588  PMID: 12934871
22.  Quality standards in Biobanking: authentication by genetic profiling of blood spots from donor's original sample 
The field of Biobanking requires extensive work to maintain traceability of samples. However, sometimes the necessity to authenticate a sample may arise. To address these circumstances, we herein present a method for authenticating derivatives by using a blood spot from each donor, attached to a sample authentication form, by means of genetic profiling. Blood spots are collected at the time a blood sample is donated at a health centre and before processing the blood sample at the biobank. To test the validity of our approach over time, we analyzed 26 blood spots stored at room temperature in our facilities for more than 15 years. DNA was successfully extracted from the three storage materials tested in this study and 15 STR markers plus amelogenin were subsequently analyzed. The storage of a small blood spot attached to a sample authentication form proved to be efficient for genetic profiling and, therefore, may constitute a long-lasting (at least 15 years), cost-effective and effortless approach for genetic authentication of samples in biobanks.
doi:10.1038/ejhg.2010.16
PMCID: PMC2987351  PMID: 20234395
biobanking; authentication; traceability; STR; microsatellite; genetic profile
23.  Women as whole blood donors: offers, donations and deferrals in the province of Huelva, south-western Spain 
Blood Transfusion  2014;12(Suppl 1):s11-s20.
Background
Women seem more willing to donate blood than men despite the limitations that affect their donation rate. The aim of our study was to determine the role of women in altruistic donation of blood in Huelva, a province in south-western Spain.
Materials and methods
We registered 87,601 offers to donate whole blood between January 1st, 2005 and December 31st, 2009. We statistically analysed variables such as sex, age, offers, deferrals and donations, problems in venous access, vasovagal reactions, weight and blood pressure to establish their significance according to donor gender.
Results
With regards to gender, 52.3% of donors were women and 47.7% men. Of the 87,601 offers to donate blood, 46.5% were from females and 53.5% from males. More females than males made their first donation during the study period. However, 43.9 % of donations were from women, whereas 56.1% were from men. Overall 8.7% of offers were deferred, 62.7% of which due to a low haemoglobin concentration, which was the most frequent cause of deferral in women. Difficulties in venous access and vasovagal reactions were also more frequent in female donors than in male donors. By the end of the study period, donor fidelity was 58.6% for men and 48.6% for women.
Discussion
In the province of Huelva, women are more altruistically inclined than men to give blood, with the percentages of donors and first-time donors being higher among females. However, there are restrictions to women giving blood, especially low haemoglobin concentration, which reduce the number of female blood donations. Women also have more difficulty when blood is withdrawn and are more susceptible to vasovagal reactions, which negatively affect their experience as donors. Measures should be taken to reduce these barriers to encourage women to continue to offer to donate blood, thereby ensuring that they become regular donors, which is a key factor in guaranteeing an adequate supply of blood within the region of Andalusia.
doi:10.2450/2012.0117-12
PMCID: PMC3934236  PMID: 23245721
female; blood donor; deferral; adverse reactions; fidelity
24.  Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study 
BMC Medical Ethics  2009;10:4.
Background
The Italian Twin Registry (ITR) has been carrying out several genetic-epidemiological studies. Collection and storage of biological material from study participants has recently increased in the light of biobanking development. Within this scenario, we aimed at investigating understanding, awareness and attitude towards blood/DNA donation of research participants. About these quite unknown dimensions more knowledge is needed from ethical and social perspectives.
Methods
Cross-sectional mail survey to explore three dimensions: (i) understanding of aims and method of a specific study, (ii) attitude (three ideas for donation: "moral duty", "pragmatism", "spontaneity") and (iii) awareness (i.e. the recall of having been asked to donate) towards blood/DNA donation for research, among all the Italian twins who had participated in Euroclot (n = 181), a large international genetic-epidemiological study. Multivariate models were applied to investigate the association of sex, age, education and modality of Euroclot recruitment (twins enrolled in the ITR and volunteers) with the targeted dimensions. Pair-wise twin concordance for the "pragmatic" attitude was estimated in monozygotic and dizygotic pairs.
Results
Response rate was 56% (99 subjects); 75.8% understood the Euroclot method, only 33.3% correctly answered about the study aim. A significantly better understanding of aim and method was detected in "volunteers". Graduated subjects were more likely to understand study aim. In the overall sample, the "pragmatic" attitude to blood donation reached 76.8%, and biobanking awareness 89.9%. The latter was significantly higher among women. Monozygotic twins were more concordant than dizygotic twins for the "pragmatic" attitude towards blood/DNA donation for research.
Conclusion
Level of understanding of aims and methods of a specific research project seems to vary in relation to modalities of approaching research; most of the twins are well aware of having been asked to donate blood for biobanking activities, and seem to be motivated by a "pragmatic" attitude to blood/DNA donation. Genetic influences on this attitude were suggested. The framing of interests and concerns of healthy participants to genetic-epidemiological studies should be further pursued, since research, particularly for "common diseases", is increasingly relying on population surveys and biobanking.
doi:10.1186/1472-6939-10-4
PMCID: PMC2703640  PMID: 19531243
25.  Challenges in creating an opt-in biobank with a registrar-based consent process and a commercial EHR 
Residual clinical samples represent a very appealing source of biomaterial for translational and clinical research. We describe the implementation of an opt-in biobank, with consent being obtained at the time of registration and the decision stored in our electronic health record, Epic. Information on that decision, along with laboratory data, is transferred to an application that signals to biobank staff whether a given sample can be kept for research. Investigators can search for samples using our i2b2 data warehouse. Patient participation has been overwhelmingly positive and much higher than anticipated. Over 86% of patients provided consent and almost 83% requested to be notified of any incidental research findings. In 6 months, we obtained decisions from over 18 000 patients and processed 8000 blood samples for storage in our research biobank. However, commercial electronic health records like Epic lack key functionality required by a registrar-based consent process, although workarounds exist.
doi:10.1136/amiajnl-2012-000960
PMCID: PMC3486732  PMID: 22878682
Biological specimen banks; biorepository; informed consent; electronic health records; medical informatics

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