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Keywords:

  • Ethics;
  • ethnicity;
  • incentives;
  • income;
  • organ donation;
  • race

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

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.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

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 exploitation of low income, vulnerable persons by the institution of incentives.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

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.

Questionnaire administration

Telephone numbers were drawn by random digit selection with equal-probability 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 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

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

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

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 ‘non-Hispanic other’ race, 9 identified themselves as American Indian or Alaskan Native, 2 identified themselves as Native Hawaiian or other Pacific Islander, 8 identified themselves as Asian, 11 identified themselves as being from ‘two or more races’ and 7 identified themselves as ‘other’. The study population was similar to the U.S. population with respect to demographic characteristics with the exception of gender and education, with the study population being comprised of a greater proportion of females (64% in study population vs. 51% in 2000 Census Data) and a smaller proportion of persons with less than a high school education (27% vs. 48%) (31). Most participants were employed full time or part time, and 87% reported having health insurance. Participants were well-distributed with regard to age, race/ethnicity, education, annual household income and census region. Statistically significant differences in distribution of age, gender, education, household income, marital status, number of dependents, insurance status and census regions were noted across racial/ethnic groups (Table 1).

Table 1.  Characteristics of participants: overall and by race/ethnicity
CharacteristicOverall n (%)2Race/ethnicity
Non-Hispanic White N = 550 n (%)2Non-Hispanic African American N = 102 n (%)2Non-Hispanic Other1 N = 37 n (%)2Hispanic (all races) N = 130 n (%)2p
  1. 1Including 9 American Indian or Alaskan Natives, 2 Native Hawaiian or Other Pacific Islanders, 8 Asians, 11 from, ‘two or more races’, and 7 ‘Others’.

  2. 2Percentages may not add to 100% due to missing values.

Age <0.01
 18–40 years318 (38)159 (29)49 (48)18 (49)80 (62) 
 41–59 years377 (45)267 (49)41 (40)12 (32)48 (37) 
 60–75 years150 (18)124 (23)12 (12)7 (19)2 (2) 
Gender <0.05
 Female540 (64)351 (64)76 (75)19 (51)87 (67) 
 Male277 (33)198 (36)23 (23)18 (49)36 (28) 
Education <0.01
 High school or less224 (27)134 (24)34 (33)11 (30)44 (34) 
 2 years college188 (22)114 (21)28 (27)5 (14)41 (32) 
 College233 (28)168 (31)29 (28)9 (24)27 (21) 
 Graduate or professional167 (20)133 (24)8 (8)12 (32)10 (8) 
Household income <0.01
 $0–$20 000115 (14)51 (9)21 (21)7 (19)36 (28) 
 $20 001–$40 000175 (21)114 (21)28 (27)5 (14)25 (19) 
 $40 001–$60 000148 (18)105 (19)17 (17)5 (14)19 (15) 
 $60 001–$80 000119 (14)90 (16)12 (12)7 (19)10 (8) 
 Greater than $80 000189 (22)153 (28)13 (13)7 (19)16 (12) 
Marital status <0.01
 Married or living with a partner477 (56)346 (63)37 (36)20 (54)71 (55) 
 Separated, divorced, widowed172 (20)112 (20)27 (26)11 (30)21 (16) 
 Never married161 (19)90 (16)35 (34)6 (16)29 (22) 
Number of dependents <0.01
 0389 (46)286 (52)41 (40)19 (51)41 (32) 
 1–2272 (32)172 (31)41 (40)13 (35)44 (34) 
 >2148 (18)88 (16)17 (17)5 (14)37 (28) 
Employment NS
 Full-time or part-time551 (65)371 (67)67 (66)26 (70)84 (65) 
 Student, homemaker or retired203 (24)148 (27)19 (19)9 (24)25 (19) 
 Disabled or unemployed58 (7)30 (5)13 (13)2 (5)13 (10) 
Insurance status <0.01
 Insured732 (87)515 (94)88 (86)34 (92)89 (68) 
 Not insured79 (9)33 (6)11 (11)3 (8)32 (25) 
Census region <0.01
 North East155 (18)101 (18)19 (19)9 (24)20 (15) 
 North Central167 (20)126 (23)22 (22)4 (11)10 (8) 
 South303 (36)185 (34)56 (55)11 (30)39 (30) 
 West220 (26)138 (25)5 (5)13 (35)61 (47) 

Overall attitudes regarding incentives for families of deceased donors and living donors

Among all respondents, fewer than one-fifth (10%) of all participants reported they believe donors' families should be compensated after donation, while 78% answered ‘no’ and 12% answered ‘depends’. Non-Hispanic Whites were less likely than non-Whites to believe that donors' families should receive compensation after donation: 8% non-Hispanic Whites versus 17% non-Hispanic African Americans, 13% Hispanics and 12% of persons of other race/ethnicity (p < 0.01). The proportion of respondents believing specific examples of potential monetary and non-monetary forms of compensation were appropriate for donors' families ranged from 7% to 17%. Among potential forms of compensation for deceased donors' families, participants were most in favor of reimbursement of the deceased donor's medical expenses, a certificate of recognition for the donor's family, greater priority on the waiting list for deceased donors' family members if they should need an organ transplant in the future, and cash donations to deceased donors' charity of choice. The proportion of respondents stating they were ‘not sure’ about specific forms of compensation ranged from 3% to 6% (Figure 1A).

image

Figure 1. Attitudes regarding compensation for deceased organ.

A. Respondents* believing form of compensation is appropriate for deceased donors' families

*Results are weighted to represent 111 040 725 households in the U.S. population

Government

Not sure option not allowed

B. Respondents* in favor of various ‘rewards’ for living donors

*Results are weighted to represent 111 040 725 households in the U.S. population

Government

Not sure option not allowed.

Download figure to PowerPoint

In contrast, participants reported much more favorable attitudes toward potential incentives for living donors (range 8–91%). An overwhelming majority of participants were in favor of medical costs being reimbursed and paid leave for living donors. Over half of the participants were in favor of living donors or their family members receiving priority on the organ waiting list should they need an organ transplant in the future. While over 40% were in favor of employer compensation for living donors, fewer participants were in favor of government tax breaks, direct payment from the government or payment by organ recipients for living donors. The proportion of respondents stating they were ‘not sure’ about specific incentives for living donors ranged from 4% to 7% (Figure 1B).

Attitudes toward incentives by participants' race/ethnicity

There were several differences in attitudes regarding incentives for donation according to participants' race/ethnicity. When considering incentives for deceased donors, African Americans were statistically significantly more likely than Whites to be in favor of reimbursement for deceased donors' funeral expenses, cash payments to deceased donors' families or estates, cash payments to deceased donors' charity of choice, tax breaks for deceased donors' families and reimbursement of deceased donors' medical expenses after adjustment. Participants of ‘Other’ races were statistically significantly more likely than Whites to be in favor of reimbursement for deceased donors' funeral expenses after adjustment. Hispanic participants were statistically significantly more likely than Whites to be in favor of reimbursement for deceased donors' funeral expenses, cash payments to deceased donors' families or estates and health insurance benefits for deceased donors' families after adjustment (Table 2).

Table 2.  Percent of participants in favor of incentive according to race and ethnicity
Type of incentiveAdjusted1 percent (95% CI) In favor of incentive by race/ethnicityp trend
Non-Hispanic White N = 550Non-Hispanic African American N = 102Non-Hispanic Other2 N = 37Hispanic (all races) N = 130
  1. 1Adjusted for age, gender, education, marital status, household income, number of dependents, employment status, health insurance status and census region.

  2. 2Including 9 American Indian or Alaskan Natives, 2 Native Hawaiian or Other Pacific Islanders, 8 Asians, 11 from, ‘two or more races’, and 7 ‘Others’.

  3. 3[ref] indicates reference group.

  4. 4p < 0.05 for this group compared to Non-Hispanic Whites.

  5. 5p < 0.01 for this group compared to non-Hispanic Whites.

For deceased donors
Monetary
  Reimbursement for funeral expenses6 [ref]314 (7–26)416 (7–35)416 (8–29)5<0.01
  Cash to family or estate5 [ref]17 (9–31)59 (3–25)11 (5–23)4<0.01
  Cash to charity12 [ref]24 (15–37)520 (8–39)18 (10–29)0.03
  Reduction in drivers' license fees5 [ref]11 (5–21)8 (3–24)5 (2–12)NS
  Government tax break8 [ref]20 (11–32)514 (5–33)9 (4–19)NS
Monetary health care
  Reimbursement for medical expenses14 [ref]23 (14–36)423 (11–42)19 (11–31)NS
  Health insurance benefits7 [ref]13 (7–25)11 (4–27)15 (8–27)40.01
Other compensation or recognition
  Certificate of recognition14 [ref]21 (13–32)20 (9–40)19 (11–30)NS
  Priority on waiting list13 [ref]17 (10–28)18 (7–36)20 (12–32)NS
For living donors
Monetary
  Government tax break/credit31 [ref]46 (34–58)421 (10–38)32 (22–44)NS
  Direct payment from the government22 [ref]44 (32–56)516 (7–33)32 (22–45)NS
  Donor paid by recipient7 [ref]10 (5–21)5 (1–21)9 (4–19)NS
  Financial compensation from employer37 [ref]54 (42–66)523 (11–40)44 (32–56)NS
Monetary health care
  Cover medical costs of donation92 [ref]85 (73–92)93 (74–98)87 (74–94)NS
  Ability to use sick time or paid leave83 [ref]86 (73–93)89 (70–97)84 (72–92)NS
Other compensation or recognition
  Priority on waiting list57 [ref]67 (55–77)50 (33–68)64 (51–75)NS

When considering incentives for living donors, African Americans were statistically significantly more likely than Whites to be in favor of tax breaks or credits, direct payment from the government and financial compensation from living donors' employers after adjustment. There were no statistically significant differences between Hispanics or participants of ‘Other’ races and White participants regarding the acceptability of incentives for living donors (Table 2).

Attitudes toward incentives by annual household income within racial/ethnic groups

Within racial/ethnic groups, patterns of attitudes regarding the acceptability of incentives for deceased organ donors and their families were variable, and for some ethnic racial groups, trends according to income were observed. Among Whites, those with annual household incomes less than $20 000 were statistically significantly more likely than persons with higher (greater than $60 000) annual household incomes to be in favor of deceased donors' families receiving reimbursement for funeral expenses and reimbursement for the deceased donors' medical expenses. Although not statistically significant, African Americans with low-annual household incomes also appeared more likely to be in favor of some incentives for deceased donors' families when compared to persons with high annual household incomes (e.g. donors' families or estates receiving cash, cash going to the donors' charity of choice, donors' families receiving a reduction in drivers' license fees, donors' families receiving reimbursement for donors' medical expenses, health insurance benefits for donors' families and a certificate of recognition to donors' families). Among Hispanics, trends were different, with persons of low annual household incomes being less likely than persons with greater income to be in favor of cash to the donors' charity of choice or a certificate of recognition to donors' families (Table 3).

Table 3.  Percent of participants in favor of incentive by race/ethnicity and annual household income
Type of IncentiveAdjusted1 percent (95% CI) in favor of incentive by race/ethnicity and annual household income
Non-Hispanic WhiteNon-Hispanic African AmericanHispanic
Greater than $60 000 (N = 243)$20 001–$60 00 (N = 219)Less than $20 000 (N = 51)p-trendGreater than $60 000 (N = 25)$20 001–$60 000 (N = 45)Less than $20 000 (N = 21)p-trendGreater than $60 000 (N = 26)$20 001–$60 000 (N = 44)Less than $20 000 (N = 36)p-trend
  1. 1Adjusted for age, gender, race/ethnicity, education, marital status, number of dependents, employment status, health insurance status and census region.

  2. 2[ref] indicates reference group.

For deceased donors
 Monetary
  Reimbursement for funeral expenses3 [ref]28 (3–18)11 (3–33)0.0113 [ref]22 (5–59)18 (2–71)NS20 [ref]19 (5–52)0 (0–15)NS
  Cash to family or estate4 [ref]4 (2–11)3 (0–11)NS14 [ref]19 (4–57)29 (5–74)NS18 [ref]11 (2–48)3 (0–36)NS
  Cash to charity9 [ref]12 (6–20)18 (7–39)NS19 [ref]31 (10–64)37 (9–77)NS20 [ref]27 [89–63]4 (1–19)0.04
  Reduction in drivers' license fees4 [ref]5 (2–12)8 (2–30)NS8 [ref]12 (2–48)33 (4–84)NS5 [ref]15 (1–77)4 (0–45)NS
  Government tax break7 [ref]11 (6–21)12 (4–33)NS22 [ref]15 (4–45)30 (5–77)NS10 [ref]36 (9–76)14 (1–69)NS
 Monetary health care
  Reimbursement for medical expenses9 [ref]16 (10–27)24 (11–46)0.0119 [ref]30 (9–65)44 (11–82)NS23 [ref]34 (10–70)5 (1–25)NS
  Health insurance benefits6 [ref]7 (3–15)7 (2–30)NS8 [ref]23 (5–64)46 (6–92)NS20 [ref]29 (7–68)11 (2–48)NS
 Other compensation or recognition
  Certificate of recognition11 [ref]12 (7–20)12 (5–28)NS17 [ref]25 (7–59)33 (8–75)NS23 [ref]28 (8–65)5 (1–24)0.04
  Priority on waiting list11 [ref]13 (7–22)13 (5–31)NS17 [ref]30 (8–67)21 (3–67)NS26 [ref]19 (5–49)8 (2–30)NS
For living donors
 Monetary
  Government tax break/credit22 [ref]24 (17–33)34 (19–53)NS56 [ref]63 (28–85)41 (12–78)NS34 [ref]57 (30–80)66 (34–88)NS
  Direct payment from government17 [ref]22 (15–32)33 (17–53)0.0544 [ref]65 (19–86)30 (8–67)NS39 [ref]52 (26–77)39 (14–72)NS
  Donor paid by recipient9 [ref]5 (2–11)14 (5–35)NS9 [ref]24 (3–71)6 (0–52)NS13 [ref]2 (0–18)4 (0–25)NS
  Financial compensation from employer34 [ref]36 (27–46)40 (25–58)NS61 [ref]71 (32–89)29 (8–64)NS41 [ref]59 (28–84)45 (17–76)NS
 Monetary health care
  Cover medical costs of donation94 [ref]94 (87–98)93 (78–98)NS90 [ref]94 (54–100)79 (27–97)NS88 [ref]96 (82–99)97 (86–100)NS
  Ability to use sick time or paid leave85 [ref]80 (69–87)90 (76–96)NS87 [ref]81 (42–96)95 (56–100)NS98 [ref]86 (20–99)90 (32–99)NS
 Other compensation or recognition
  Priority on waiting list59 [ref]54 (44–64)47 (30–65)NS69 [ref]71 (41–90)59 (24–87)NS56 [ref]60 (30–84)87 (52–98)NS

When considering incentives for LD, Whites of low income were statistically significantly more likely to be in favor of living donors receiving direct payment from the government when compared to Whites with greater incomes after adjustment. Although not statistically significant, there appeared to be a similar trend for Whites of low income to be in favor of living donors receiving government tax breaks or credits. Although nonstatistically significant, there appeared to be a similar trend among Hispanics, with Hispanics of low income being more in favor of living donors receiving government tax breaks or credits compared to Hispanics with greater incomes. There appeared to be no income trends regarding incentives for living donors among African Americans (Table 3). Formal tests of interaction showed no statistically significant difference in trends according to income among racial/ethnic groups.

Association between willingness to donate and attitudes toward incentives

Overall, 498 (59%) of participants reported they were organ donors on their drivers' licenses, and 539 (69%) stated they would be willing to become a living organ donor in the future (1 participant had already donated). Overall, persons declaring themselves willing to donate on their drivers' licenses were statistically significantly less likely to be in favor of certain incentives for deceased donation (DD) (including a certificate of recognition for deceased donors' families, reimbursement for medical expenses, reimbursement for funeral expenses, cash to the donor's family or estate, cash to the donor's charity of choice, health insurance benefits for the donor's family, and future priority on the waiting list should a donor's family member need an organ). While these trends were similar for Whites, we detected no statistically significant differences in attitudes toward incentives for families of deceased donors among African Americans and Hispanics according to their willingness to donate (Table 4). In contrast, African Americans who reported they would consider becoming living donors in the future were statistically significantly more likely than their counterparts not willing to donate to be in favor of tax breaks or credits for living donors or future priority on the waiting list if living donors or their family members would need a transplant. This trend was not observed for Whites or Hispanics (Table 5).

Table 4.  Percent of participants in favor of incentives according to willingness to become deceased donors
Willingness to donate2Adjusted1 percent (95% CI) in favor of incentive by race/ethnicity In favor of incentives for deceased donors
MonetaryMonetary health careOther Compensation or recognition
Reimbursement for funeral expensesCash to family or estateCash to charityReduction in drivers' feesGovernment tax breakReimbursement for medical expensesHealth insurance benefitsCertificate of recognition recognitionPriority on waiting list
  1. Willingness to become a deceased donor considered when examining attitudes toward incentives for deceased donors.

  2. 1Adjusted for age, gender, race/ethnicity, education, marital status, household income, number of dependents, employment status, health insurance status and census region.

  3. 2Willingness to donate defined as participants indicating they are organ donors on their drivers' license (for DD) or participants indicating they would consider becoming a living donor in the future (for LD).

  4. 3p < 0.05 for comparison to persons not willing to donate.

  5. 4p < 0.01 for comparison to persons not willing to donate.

  6. 5[ref] indicates reference group.

All participants
 Willing8 (4–13)35 (3–9)413 (9–19)47 (4–13)10 (6–16)14 (9–20)48 (5–14)314 (9–20)413 (9–20)4
 Not willing15 [ref]512 [ref]24 [ref]10 [ref]14 [ref]26 [ref]14 [ref]24 [ref]23 [ref]
Non-Hispanic White
 Willing3 (1–7)42 (1–4)49 (5–15)44 (2–9)8 (4–14)11 (7–18)45 (3–10)311 (7–17)410 (6–16)4
 Not willing13 [ref]11 [ref]20 [ref]9 [ref]13 [ref]24 [ref]11 [ref]23 [ref]21 [ref]
Non-Hispanic African American
 Willing14 (3–44)20 (6–49)24 (9–51)15 (4–47)15 (4–41)16 (4–45)15 (4–46)16 (5–39)14 (4–41)
 Not willing11 [ref]15 [ref]29 [ref]12 [ref]17 [ref]31 [ref]15 [ref]28 [ref]24 [ref]
Hispanic
 Willing30 (10–63)8 (2–23)10 (3–31)19 (4–60)14 (3–46)20 (6–47)11 (3–33)21 (5–56)23 (7–53)
 Not willing20 [ref]14 [ref]26 [ref]8 [ref]15 [ref]26 [ref]23 [ref]19 [ref]25 [ref]
Table 5.  Percent of participants in favor of incentives according to willingness to become living donors
Willingness to donate2Adjusted1 percent (95% CI) in favor of incentive by race/ethnicity In favor of incentives for living donors
MonetaryMonetary health careOther compensation or recognition
Government tax break/creditDirect payment from the governmentDonor paid by recipientFinancial compensation from employerCover medical costs of donationAbility to use sick time or paid leavePriority on waiting list
  1. Willingness to become a living donor considered when examining attitudes toward incentives for living donation.

  2. 1Adjusted for age, gender, race/ethnicity, education, marital status, household income, number of dependents, employment status, health insurance status and census region.

  3. 2Willingness to donate defined as participants indicating they are organ donors on their drivers' license (for deceased donation) or participants indicating they would consider becoming a living donor in the future (for living donation).

  4. 3[ref] indicates reference group.

  5. 4p < 0.05 for comparison to persons not willing to donate.

All participants
 Willing35 (27–44)30 (23–39)7 (4–12)42 (34–51)90 (83–94)82 (74–88)58 (50–66)
 Not willing32 [ref]325 [ref]8 [ref]35 [ref]90 [ref]82 [ref]61 [ref]
Non-Hispanic White
 Willing28 (20–37)22 (15–31)6 (3–12)37 (28–47)90 (81–95)81 (72–88)56 (46–65)
 Not willing30 [ref]20 [ref]7 [ref]35 [ref]91 [ref]81 [ref]63 [ref]
Non-Hispanic African American
 Willing70 (44–88)451 (27–74)27 (5–74)67 (42–86)88 (61–97)77 (44–93)76 (52–90)4
 Not willing37 [ref]34 [ref]8 [ref]43 [ref]83 [ref]88 [ref]50 [ref]
Hispanic
 Willing48 (27–70)46 (25–69)10 (2–34)56 (31–79)78 (36–96)94 (80–99)37 (13–70)
 Not willing46 [ref]41 [ref]15 [ref]43 [ref]91 [ref]86 [ref]66 [ref]

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

This nationally representative study shows that the acceptability of incentives depends on the type of donation as well as race/ethnicity and income characteristics of persons being asked about incentives. Less than one in five persons in the United States reported being in favor of monetary or nonmonetary incentives for DD while attitudes toward particular incentives for LD (reimbursement for medical costs, paid leave from work, and priority on the waiting list) were favored by more than a majority of participants. Racial and ethnic minorities were more supportive than Whites of some incentives for DD, even after adjustment for income, education, employment, health insurance, marital status, number of dependents and geography. Among Whites, persons of lower annual household income were more in favor of monetary incentives for both deceased and LD than persons with greater annual household incomes. These trends were not statistically significantly different across racial/ethnic groups. White participants declaring themselves organ donors on their drivers' licenses were less likely to be in favor of certain incentives for deceased donors, while African American participants declaring themselves willing to consider becoming living donors were more likely to be in favor of incentives for living donors. These findings portray national attitudes regarding the acceptability of a variety of monetary and nonmonetary incentives to the general public, and they shed light on some of the complex ethical issues debated among clinicians, ethicists and policy makers regarding the implementation of incentives.

Our finding that most of the general public is not in favor of compensating deceased donors' families after donation differ from findings of a regional study, in which a majority of respondents were in favor of government sponsored incentives to enhance deceased organ donation by relatives (32). Differences in these studies' findings may stem from the populations studied as well as methodological differences between the two studies, including differences in the way questions regarding the acceptability of incentives for families of deceased donors were posed. We asked respondents if they believed compensation of deceased donors' families is warranted ‘if a person donates their organs after death’, while the regional study asked respondents about the use of incentives to encourage future donations. Persons' attitudes regarding donations which have already occurred may differ widely from their attitudes regarding incentives for future donations. Some respondents could feel accepting compensation after donation might erode the actual or perceived altruistic features of the donation. Other differences in studies' methods for selection of respondents, questionnaire administration and study populations (including their region of residence) may also have contributed to differences in findings. These differences highlight the complex considerations persons may take into account regarding the acceptability of incentives for donation and underscore the importance of studying how attitudes toward potential incentives might differ if proposed under varying circumstances in different populations. More favorable attitudes regarding incentives for LD, particularly incentives related to health-care costs, medical leave and priority on the waiting list may reflect participants' acknowledgement of financial and health-related hardships that living donors may take on in the process of donating, and may also reflect participants' willingness to endorse incentives for future donations that might not otherwise occur on an altruistic basis.

Few studies have assessed attitudes toward incentives for donation among racial/ethnic minorities; however, we are aware of one regional study demonstrating African American college students might change their attitudes toward DD if offered an incentive and one regional study demonstrating non-Whites had more favorable attitudes than Whites toward financial incentives for families of deceased organ donors (32,33). Our study extends this research by examining the acceptability of a variety of incentives for both deceased and LD not only among African Americans but also among Hispanics across the nation.

Our findings of inconsistent overall trends in attitudes regarding incentives for deceased and LD by annual household income within racial/ethnic groups suggest financial motivations may play a limited role in affecting persons' attitudes toward less commonly accepted incentives. It is also noteworthy that the direction of trends according to income may be different based on the race/ethnicity of persons (e.g. Hispanics of low income were less likely than their counterparts with high income to prefer some incentives). Thus, both race/ethnicity and income should be considered simultaneously when examining attitudes toward incentives. Race/ethnicity and income differences may reflect differences in participants' perceptions of risks of LD and trust toward the health care establishment (34).

Limitations of this study deserve mention. First, we did not provide respondents with information regarding the potential implications of endorsing incentives for organ donation, nor did we provide extensive information regarding the context in which incentives for donation could be offered. It is unclear whether respondents to our questionnaire may have needed more of this type of information to accurately guide their reported preferences for incentives. Differences in our findings from previous work (32) highlight the potential effect contextual information and question phrasing may have on persons' reported attitudes. It is possible the provision of minimal information to respondents regarding the timing of DD with respect to offering incentives and use of the term ‘appropriate’ could have contributed to imprecision in our findings, resulting in disparate results. Respondents may have felt that incentives could be ‘appropriate’ for others generally but might not be ‘appropriate’ for them personally. Further work is needed to validate findings on national attitudes regarding incentives for both deceased and living organ donation and to assess the circumstances under which attitudes might change. For example, we presented each of several potential incentives to participants as all or none without specifically identifying the amount of financial or health-care related reimbursement. Attitudes toward incentives might change if the amounts of compensation are specified. Further, while favorable attitudes toward incentives might indicate participants' acceptance on an ethical basis, it is possible favorable attitudes might not reflect persons' willingness to change donation behaviors if offered incentives. Second, interviewers posed all questions regarding incentives to each respondent in the same order. It is possible respondents' strong opinions regarding incentives proposed earlier in the questionnaire could have affected their answers regarding incentives proposed later in the questionnaire. Third, our study was initially designed to have statistical power to detect differences in attitudes between Whites and non-Whites; however, it is possible our study did not have sufficient statistical power to detect differences by income within racial/ethnic groups. In addition, our study targeted persons living in households with telephones, who may be more affluent than persons we might have contacted using a different study design (e.g. door-to-door household surveys). Studies outside the United States have demonstrated the severely impoverished are most susceptible to exploitation by the presence of a black market for donated organs (35). Fourth, some persons we sampled who reported the lowest annual household incomes (<$20 000) may not have met criteria for poverty based on U.S. poverty guidelines. However, 51% of our participants with incomes <$20 000 reported having at least one dependent; indicating a substantial proportion of them were likely to meet U.S. poverty standards (36). Finally, persons responding to our questionnaire may have an express interest in organ donation, and their attitudes could therefore be systematically different from persons choosing not to participate. Notwithstanding these limitations, this study documents national attitudes toward donation incentives and the relative importance of income and race/ethnicity.

In summary, the U.S. public views monetary and nonmonetary incentives for deceased organ donors and their families less favorably than incentives for living donors. Attitudes toward incentives for deceased and LD vary according to participant race/ethnicity, and persons of lower income may be more likely to be accepting of certain incentives. Institution of incentives deemed acceptable such as those for LD could potentially enhance donation rates, particularly among racial/ethnic minority groups with historically lower rates of donation. Attitudes toward monetary incentives among persons with different incomes warrant further study.

Acknowledgment

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

National Kidney Foundation of Maryland Mini-Grant; Robert Wood Johnson Harold Amos Faculty Development Program (Dr. Boulware); Grant no. MO1RR02719 from the National Center for Research Resources (Dr. Wang); Grant no. K240502643 from National Institute of Diabetes and Digestive and Kidney Diseases (Dr. Powe).

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix
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Appendix

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Acknowledgment
  8. References
  9. Appendix

I. Questions to assess respondents' attitudes regarding compensation to donors' family members for deceased donation:

I am now going to ask you some questions about compensation for organ donation.

If a person donates their organs after death, do you believe the donor's family should be compensated in some way for the donation? Your answer may be YES, NO or DEPENDS

No…………………………………………………………….0

Yes…………………………………..…………….1

Depends…………………………………………..2

I am going to read you some potential methods of compensation that could be offered to an organ donor's family. Please answer with YES, NO or NOT SURE if you think these examples could be appropriate.

Do you think a certificate of recognition to be given to the donor's family is appropriate? (this is a special piece of paper recognizing the donor's contribution)

No…………………………………………….0

Yes……………..……………………….….……1

Not Sure…………………………………………2

Do you think reimbursement for the organ donor's medical expenses is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you think reimbursement for the organ donor's funeral expenses is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you think cash to the donor's family or estate is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you think cash to the donor's charity of choice is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you think a reduction in driver license fees or auto registration fees for the donor's family is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you think a government tax break or credit for the donor's family is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you think health insurance benefits for the donor's family is appropriate?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

A waiting list determines who will receive an organ first. If a person dies and donates their organs, do you think their living family members should get priority on the waiting list if they need an organ in the future?

No.………………………….…………………….0

Yes…………………………………..…………….1

II. Questions to assess respondents' attitudes regarding rewards for living donation:

If you donate an organ as a live donor, would you prefer to use your own sick time, meaning unpaid time for illness, or would you prefer paid leave, meaning that you will be paid by your employer or the government?

Sick Days…………………………………………..0

Paid Leave…………………………………………1

Neither…………………………………………….2

I am going to read some examples of possible ‘rewards’ for living organ donors. Please answer the questions with YES, NO, or NOT SURE.

Are you in favor of health insurance benefits that cover the medical costs of the donation procedure for LIVE DONORS?

No……………………………………………….0

Yes……………..……………………….….……1

Not Sure…………………………………………2

Are you in favor of LIVING DONORS receiving financial compensation from their employer? (money is the type of compensation)]

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Are you in favor of government tax breaks or credit for LIVING DONORS?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Are you in favor of direct payment from the government for LIVING DONORS?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

Do you believe a LIVING ORGAN DONOR should be paid by the person receiving the donated organ?

No……………………………………………….0

Yes……………..……………………….….……1

Not sure…………………………………………2

A waiting list determines who will receive an organ first. If you become a living organ donor, would you like to get a higher priority on the waiting list if you or your family member should need an organ in the future?

No………………………………………………. 0

Yes……………..……………………….………..1