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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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

Summary

This article focuses on the members of Generation Y and their willingness to offer voluntary (unpaid) blood donations. Using statistics from various sources, a three-stage model is developed to explain blood donation behaviour especially of this generation. It consists of i) developing altruism, ii) raising the willingness to donate blood, and iii) activating actual blood donation behaviour. Members of Generation Y live in a Darwinistic society. They also to some degree act opportunistically, but not in contradiction to altruism. For that reason, the article positions itself in the theoretical framework of Darwi-portunism and derives practical suggestions as well as implications for research.

BACKGROUND

Blood banks have large altruistic donor populations and existing infrastructure that make them attractive sites for genetic epidemiologic research, but donors’ willingness to participate and the impact on blood donation are unknown.

STUDY DESIGN AND METHODS

A total of 2162 blood donors in Northern California responded to a cross-sectional questionnaire in August and September 2007. Participants were asked their likelihood of participation and future blood donation under three different scenarios: identity-linked genetic research, identity-unlinked genetic research, and genetic testing as a service.

RESULTS

The majority of blood donors indicated that they would be likely or very likely to participate in identity-linked genetic research (67%) and in identity-unlinked genetic research (54%). While older donors and more frequent donors were more likely to participate in identity-linked research, younger, Caucasian, more educated, and more frequent donors were more likely to participate in identity-unlinked research. Less than 10% of donors indicated they would be less likely to donate blood in the future if genetic research was conducted at blood banks. More than 75% of donors would be interested in genetic testing as an optional service at the blood bank, but more than 20% of donors would be less likely to donate if such a service was offered.

CONCLUSION

Overall, we found that the majority of blood donors would be likely to participate in genetic research and that less than 10% would be less inclined to donate if such research was conducted by blood banks.

Questionnaires were administered to 108 university psychology students to investigate attitudes and behaviour related to organ donation. Three groups (committed, uncommitted and opposed) were identified. A multivariate analysis of variance showed that, compared with uncommitted donors, committed donors felt better informed about organ donation, had discussed donation more often with family members and knew more people who had signed donor cards. The subjects in the opposed group and those in the uncommitted group cited different reasons for not signing a donor card. Empathy, religious beliefs and attitudes about death did not affect willingness to donate. Analyses of the interaction between willingness to donate one's own organs and willingness to donate those of a family member revealed a monotonic increase in willingness to donate the organs of a family member as the type of recipient became more personally relevant. Our findings indicate that when health care professionals request donor organs the potential recipients must be presented to the potential donors in a personally relevant manner. Educational programs must be developed to train medical personnel in how to effectively ask for organs without coercing the potential donor or invading the privacy of the potential recipient.

Background

It is unclear how the possible effects of genetic research on socially identifiable groups may impact patient willingness to donate biological samples for future genetic studies.

Methods

Telephone interviews with patients at 5 academic medical centers in the U.S. examined how patients’ beliefs about benefits and harms to ones racial or ethnic group shape decisions to participate in genetic research.

Results

Of the 1,113 patients who responded to questions about group harms and benefits, 61% of respondents indicated that potential benefits to their own racial or ethnic group would be a big or moderate part of their decision to donate a sample for genetic research. 63% of black respondents and 57% of white respondents indicated that they were ‘very’ or ‘moderately concerned’ about genetic research findings being used to discriminate against people by race or ethnicity. 64% of black and 34% of white respondents reported that their willingness to donate a blood sample would be substantially reduced due to these concerns.

Conclusion

Our findings suggest that a key factor in many patients’ decisions to donate samples for genetic research is how those studies may impact identifiable racial and ethnic groups. Given the importance of these considerations to many patients, our study highlights a need to address patients’ concerns about potential group benefits and harms in the design of future research studies and DNA biobanks.

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.

Background:

The aim of the current research was to determine disparities in blood donation motives among the general mass of Sikkim.

Aims:

To identify the reasons for people donating and not donating blood voluntarily.

Settings and Design:

Population based cross-sectional study in Gangtok, East Sikkim.

Materials and Methods:

PARTICIPANTS: 300 adults by two-stage cluster sampling technique. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Correlates of attitudes towards blood donation. DATA COLLECTION PROCEDURE: The data collection tool used for the study was a pre-tested structured interview schedule by which the principal investigator collected the data using interview technique.

Statistical Analysis Used:

Percentages and ODDS ratio were used in this study.

Results and Conclusions:

Out of 300 respondents, overwhelming majority (78.7%) of the respondents in the present study felt that people donate blood to save a friend or a relative. On the contrary, minority respondents (46%) were ready to donate blood voluntarily. Only 12.7% of the respondents had ever donated blood while 87.3% had never donated. Among ever donors, gender wise men donors were found to be more; 89% were married, half were from the 30 to 39 years age group. As the per-capita income or level of education increased, so did the percent of blood donors.

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.

During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.

The international transfer of human biomaterial and data has become a prerequisite for collaborative biomedical research to be successful. However, although a national legal framework for ‘biobanking' has already been formulated in many countries, little is known about how an international exchange of data and samples might affect the legal position of national biobanks and their donors. The German Telematics Platform and the Competence Network ‘Congenital Heart Defects' jointly instigated a project (BMB-EUCoop) to (i) identify and assess the legal risks ensuing for biobanks and their donors in the context of Europe-wide research collaborations, (ii) devise practical recommendations to minimize or avoid these risks, and (iii) provide generic informational text, contracts and agreements to facilitate their practical implementation. Four different countries were included in the study; namely, the UK, Netherlands, Austria and Switzerland. The results of the study indicate that the degree of similarity between legal systems in different countries varies according to the respective field of jurisdiction. Although personality and property rights have long been enshrined in virtually identical pieces of law, the applicable medical professional regulations were found to be somewhat heterogeneous. Furthermore, clear-cut differences were often found to be lacking between regulations that reflect either ‘soft law' or the nationally binding ‘hard law' that has emerged from it. In view of the potential ambiguities, the experts uniformly concluded that the rights and interests of national (in this case, German) biobanks and their donors would be best protected by explicitly addressing any uncertainties in formal contractual agreements.

OBJECTIVE--To see whether the issue of AIDS has influenced the observed decline in blood donation in Scotland. DESIGN--Two methods: a quantitative survey using personal interviews based on a questionnaire and a qualitative survey based on group discussions. SETTING--Interviews based on the questionnaire were conducted in the respondents' homes. The group discussions were held in the homes of professional market research interviewers. PARTICIPANTS--For the quantitative survey a representative sample of 976 Scottish adults was selected by multistage sampling. In the qualitative survey 16 groups of five to eight respondents assigned according to donating experience and sociodemographic criteria took part. MAIN RESULTS--AIDS was not mentioned as a discouraging factor in donation, and off putting aspects identified before AIDS became a public issue remained salient--for example, fear of needles. Many (75%) thought it unlikely that donation entailed a risk of developing AIDS. Nevertheless, respondents were reluctant to consider the AIDS issue personally. Being asked to do so, as in the routine screening of donors, aroused fears and resentment. CONCLUSIONS--The issue of AIDS, including fear of infection, has not directly influenced the declining numbers of donors, but the unpleasant associations of AIDS have had an indirect effect, particularly in undermining the emotional benefits of giving blood. For example, the screening process, which requires potential donors to consider their personal risk from AIDS, had had the effect of discouraging donors in general. Redressing the balance is difficult as screening must be universally applied. Rather than minimising the issue of AIDS, publicity needs urgently to reassert the positive benefits of and rewards from giving blood.