American Journal of Transplantation 2006; 6: 2774–2785 Blackwell Munksgaard
C 2006 The Authors C 2006 The American Society of Journal compilation Transplantation and the American Society of Transplant Surgeons
doi: 10.1111/j.1600-6143.2006.01532.x
Public Attitudes Toward Incentives for Organ Donation: A National Study of Different Racial/Ethnic and Income Groups L. E. Boulwarea,b,c, ∗ , M. U. Trolla,c , N. Y. Wanga,c and N. R. Powea,b,c a
Department of Medicine, Johns Hopkins School of Medicine, Baltimore, Maryland, USA b Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA c Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, Maryland, USA ∗ Corresponding author: L. Ebony Boulware,
[email protected] Attitudes toward monetary and nonmonetary incentives for living (LD) and deceased donation (DD) among the U.S. general public and different racial/ethnic and income groups have not been systematically studied. We studied attitudes via a telephone questionnaire administered to persons aged 18–75 in the continental United States. Among 845 participants (85% of randomized households), less than one-fifth participants were in favor of incentives for DD (range 7–17%). Most persons were in favor of reimbursement of medical costs (91%), paid leave (84%) and priority on the waiting list (59%) for LD. African Americans and Hispanics were more likely than Whites to be in favor of some incentives for DD. African Americans were more likely than Whites to be in favor of monetary incentives for LD. Whites with incomes less than $20 000 were more likely than Whites with greater incomes to be in favor of reimbursement for deceased donors’ funeral expenses or medical expenses. The U.S. public is not generally supportive of incentives for DD, but is supportive of limited incentives for LD. Racial/ethnic minorities are more supportive than Whites of some incentives. Persons with low income may be more accepting of certain monetary incentives. Key words: Ethics, ethnicity, incentives, income, organ donation, race Received 1 May 2006, revised 6 July 2006 and accepted for publication 13 July 2006
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Introduction The widening disparity between greater numbers of persons awaiting organ transplants and relatively small increases in the number of available organs for transplantation has focused public attention on ways donation rates can be improved (1,2). Lower rates of deceased organ donation among certain ethnic/racial minority groups in the setting of greater need for some organs (particularly kidneys, for which immunologic factors affect compatibility of transplanted kidneys and transplant outcomes) have also heightened awareness of the need for efforts to understand mechanisms through which donation among different ethnic/racial groups can be improved (3–5). Public incentives (such as financial reimbursement, health care-related reimbursement or other recognition for living donors or deceased donors’ families) to enhance persons’ decisions to donate have been widely debated (6–11). Concerns regarding the exploitation of persons with low income and regarding the appropriateness of applying a monetary value to human organs have spurred many groups to denounce monetary incentives for donation (9,12,13). Others have argued that individuals should be permitted to make decisions regarding donation autonomously and have encouraged the use of market forces to enhance supply of organs (14–19). While the National Organ Transplant Act prohibits the valuable exchange of organs in the United States, there has been little national law or regulations with regard to specific monetary transactions or incentives for deceased (DD) or living donation (LD) (20). The National Organ Donor Leave Act of 1999 provides for additional leave time for living organ donors who are federal employees, and some states have implemented laws providing paid medical leave of absence as well as tax deductions for living donors in an effort to enhance LD (21–25). In the midst of differing public policies regarding incentives, it is unclear if the general public or persons from certain sociodemographic groups (e.g. persons of different races or with low income) are more or less likely to find incentives for donation acceptable. We conducted a systematic study to: (a) identify incentives for DD and LD deemed most acceptable to the public, (b) identify incentives more favorable to certain racial/ethnic groups which might enhance donation and (c) assess the potential for
Public Attitudes Toward Incentives for Organ Donation
exploitation of low income, vulnerable persons by the institution of incentives.
Methods Study design and population Our study design was a national, cross-sectional study using a standardized questionnaire in which we asked persons in the age group of 18–75 about their attitudes regarding the acceptability of potential monetary incentives, monetary health care-related incentives and nonmonetary incentives for both deceased donors’ families and living donors. We also assessed participants’ willingness to become deceased or living organ donors. The study population consisted of persons living within households in the continental United States. A majority of participants (n = 720, 85%) were selected from households identified using random digit selection of telephone numbers within the nine U.S. census divisions. We performed over-sampling of households in all four U.S. census regions (n = 125, 15%) to enhance the numbers of African American and Hispanic participants. We devised our total sample size to detect a margin of error of 3% or less between attitudes (in favor of vs. not in favor of) toward incentives for the entire population. We devised our sample size for non-Whites (including non-Hispanic African Americans, Hispanics and persons of ‘Other’ race) to detect differences in attitudes toward incentives with a 5% margin of error between Whites and non-Whites. The study was approved by the Institutional Review Board at the Johns Hopkins Medical Institutions.
donation (including reimbursement for the donor’s medical expenses, reimbursement for the donor’s funeral expenses, cash to the donor’s family, cash to the donor’s charity of choice, a reduction in driver license fees, government tax breaks or credit, health insurance benefits, a certificate of recognition or priority on the waiting list if a donor’s family member should need an organ in the future). For most questions regarding the appropriateness of different methods of compensation, allowable answers were ‘yes’, ‘no’ or ‘not sure’ (see the Appendix). Assessment of support for incentives for living donors: We assessed participants’ attitudes regarding the use of paid leave or sick time for living donors as well as their attitudes regarding other potential monetary and nonmonetary incentives (termed ‘rewards’) for living donors (including financial compensation from employers, government tax breaks, direct payment from government, payment from organ recipients, health insurance benefits and priority on the organ waiting list for the donor or their family member if they should need an organ in the future). Most questions asked respondents if they were ‘in favor’ or a specific incentive and allowable answers for most questions were ‘yes’, ‘no’ or ‘not sure’ (see the Appendix). Assessment of sociodemographic and socioeconomic characteristics: We assessed participants’ age, gender, race/ethnicity, education completed, annual household income, number of dependents living in the household, marital status, employment status, insurance status and census region of residence.
Statistical analysis Questionnaire administration Telephone numbers were drawn by random digit selection with equalprobability sampling techniques (26). Trained interviewers placed telephone calls and administered the survey during evenings and weekends within all time zones of the continental United States. When households were reached, random person selection within households was accomplished by using the next birthday method (27). No substitutions were permitted; no one other than the randomly selected individual within each household was interviewed. If the selected individual was unavailable, arrangements were made to call back at another time. Surveys were conducted from May 2004 through August 2005.
Questionnaire content The 20-min questionnaire was administered to participants in both English and Spanish and assessed participants’ opinions regarding the appropriateness of several potential incentives for deceased donors (and their families) and living donors. In light of documented variability in attitudes regarding organ donation according to ethnicity/race (5,28) and ethical concerns regarding the potential implementation of monetary incentives (13,29), we hypothesized a priori that attitudes toward incentives could vary according to ethnicity/race, and that attitudes toward incentives could vary according to respondents’ income levels. Questions regarding incentives for deceased and living organ donation were administered in separate sections of the questionnaire. All respondents received questions regarding incentives in the same order (see the Appendix). Assessment of support for incentives for families of deceased organ donors: We assessed participants’ attitudes regarding compensation for deceased donors’ families by first asking a general question regarding such compensation, ‘If a person donates their organs after death, do you believe the donor’s family should be compensated in some way for the donation?’ Answers could be ‘yes’, ‘no’ or ‘depends’. This question was followed by a series of questions to determine whether persons felt a variety of specific methods of monetary and nonmonetary forms of compensation for the donor’s family would be appropriate to offer to donor’s families after
American Journal of Transplantation 2006; 6: 2774–2785
To obtain national estimates generalizable to U.S. households, we weighted all analyses using sampling probabilities based on the distribution of 111 040 725 households in the census regions we sampled during 2004– 2005. We used weighted descriptive analyses to obtain estimates regarding the acceptability of incentives to the entire U.S. population. Persons answering ‘yes’ (vs. ‘no’ or ‘not sure’) were considered to be in favor of individual incentives. We used weighted multiple logistic regression to assess the independent association of race/ethnicity to favorable versus unfavorable attitudes toward incentives while simultaneously controlling for all other demographic characteristics of participants. We also performed stratified multivariable analyses in which participants were stratified according to their race and then categorized according to their annual household incomes. We performed formal tests of interactions to assess for differences in attitudes by income among racial/ethnic groups as well. We also assessed the association between willingness to become a deceased or living organ donor and favorable attitudes toward incentives among all participants and different ethnic racial groups after controlling for participants’ demographic characteristics, using weighted logistic regression. We converted odds ratios from logistic regression models to adjusted percentages (30).
Results Response rate and characteristics of the study population Prior to over-sampling, we contacted a total of 847 homes who agreed to randomization of participants within the household. Of these homes, 720 persons were eligible and agreed to participate (85%). This initial sample consisted of 44 (6%) non-Hispanic African Americans and 63 (9%) Hispanic participants. Over-sampling resulted in an additional 125 ethnic minority persons agreeing to participate in the study (58 non-Hispanic African Americans and 67 Hispanics). Among 37 participants categorized as being of ‘nonHispanic other’ race, 9 identified themselves as American 2775
Boulware et al. Table 1: Characteristics of participants: overall and by race/ethnicity Race/ethnicity
Characteristic Age 18–40 years 41–59 years 60–75 years Gender Female Male Education High school or less 2 years college College Graduate or professional Household income $0–$20 000 $20 001–$40 000 $40 001–$60 000 $60 001–$80 000 Greater than $80 000 Marital status Married or living with a partner Separated, divorced, widowed Never married Number of dependents 0 1–2 >2 Employment Full-time or part-time Student, homemaker or retired Disabled or unemployed Insurance status Insured Not insured Census region North East North Central South West
Overall n (%)2
Non-Hispanic White N = 550 n (%)2
Non-Hispanic African American N = 102 n (%)2
Non-Hispanic Other1 N = 37 n (%)2
Hispanic (all races) N = 130 n (%)2
p
