Donor Nephrectomy Outcome Research (DONOR) Network Investigators: Neil Boudville, Laurence Chan, Mona Doshi, Amit Garg, Colin Geddes, Eric Gibney, John Gill, Martin Karpinski, Scott Klarenbach, Greg Knoll, Charmaine Lok, Mauricio Monroy-Cuadros, Norman Muirhead, Chirag Parikh, Emilio Poggio, G. V. Ramesh Prasad, Leroy Storsley, Sudha Tata, Darin Treleavan, Robert Yang
Being an organ donor may affect one's ability to obtain life, disability and health insurance. We conducted a systematic review to determine if insurability is affected by living organ donation, and if concern about insurability affects donor decision making. We searched MEDLINE, EMBASE, SCI, EconLit and Cochrane databases for articles in any language, and reviewed reference lists from 1966 until June 2006. All studies discussing the insurability of living organ donors or its impact on donor decision making were included. Data were independently abstracted by two authors, and the methodological quality appraised. Twenty-three studies, from 1972 to 2006, provided data on 2067 living organ donors, 385 potential donors and 239 responses from insurance companies. Almost all companies would provide life and health insurance to living organ donors, usually with no higher premiums. However, concern about insurability was still expressed by 2%–14% of living organ donors in follow-up studies, and 3%–11% of donors actually encountered difficulties with their insurance. In one study, donors whose insurance premiums increased were less likely to reaffirm their decision to donate. Based on available evidence, some living organ donors had difficulties with insurance despite companies reporting otherwise. If better understood, this potential barrier to donation could be corrected through fair health and underwriting policies.
Living organ transplantation is the treatment-of-choice for patients with kidney failure, and a rapidly growing alternative for patients waiting for liver and lung transplantation. The process by which one arrives at the decision to become a living organ donor is a complex one. Although some positive motivators and barriers have been identified (1–5), much remains unknown of the donor decision-making process. For instance, it is not known if financial consequences of donation prevent some individuals from becoming living organ donors. Better understanding of these potential barriers to donation may facilitate their removal and increase rates of donation.
Currently, there is some uncertainty as to whether donating an organ (or part thereof) affects one's ability to obtain or maintain life, disability and health insurance. In an informal survey at a recent Canadian meeting, there was clear equipoise among nephrologists: 47% felt life insurance premiums would be higher for living kidney donors, in comparison with eligible nondonors (Conducted by Drs. A. Garg & R. Suri at CSN 2003). Similarly, 53% felt donors would face higher health insurance premiums. The Canadian Council for Donation and Transplantation (CCDT) has also identified insurability as a possible adverse outcome and potential barrier to donation.
This uncertainty may be a source of concern for potential living organ donors, and may even affect their decision to donate. Moreover, even if donors are willing to accept risks of noninsurability and/or higher insurance premiums, transplant professionals still have an ethical obligation to ensure that donors are not unnecessarily penalized. Clearly, better understanding of insurability issues is needed, in order to allow informed consent, address donor concerns, and prevent them from becoming a barrier to donation.
The purpose of this systematic review was to gather and summarize existing evidence on whether living organ donation affects insurability, but also, whether insurability issues have a negative impact on donors, potential donors, and their decision making. Specifically, we focused on three primary questions:
1Does becoming a living organ donor affect one's ability to obtain or maintain life, disability or health insurance?
2Are living organ donors (and potential donors) concerned about the impact donation has on their life, disability and health insurability?
3Does concern about insurability constitute a barrier to living organ donation?
We also planned a priori to explore any difference in insurability between donors from countries with different health care systems.
We included original studies of any design, in any language, that examined five or more adult living donors of any solid organ (or significant portions of one) and their experience with life, disability and health insurance. We also included studies of insurance companies on their dealing with living organ donors, as well as studies of transplant professionals providing empirical data on living organ donor insurability. Studies involving only deceased donors, pediatric donors or for-profit organ donors were excluded. Editorials and commentaries were also excluded, as were analyses of state-run insurance (e.g. Medicaid/Medicare in the United States) with no discussion of donor-insurance interaction.
Finding relevant studies
In the primary search, citations were compiled from bibliographic databases, including: MEDLINE (both PubMed and OVID, 1966–2006, June week 2), EconoLit (1969–2006 June), EMBASE (1980–2006, week 24), CINAHL (1982–2006, week 3), ISI SCI-Expanded (which includes the Science Citation Index-Expanded, the Social Science Citation Index and the Arts & Humanities Citation Index) (1981–2006) and the Cochrane Library. The search strategies are available from authors upon request. The citations were downloaded into Reference Manager, version 10.0 (Thompson ISI Research-Soft, Philadelphia, PA) and duplicate citations removed.
Since insurability and its effect on donors are often assessed among many other outcomes in donor follow-up studies, and thus poorly indexed by bibliographic databases, low thresholds were used in selecting citations for further review. Citations from the primary search were retrieved, translated if necessary and reviewed in full text.
To further identify relevant studies, a secondary search was performed, making use of reference lists of previous reviews (6, 7) and of studies identified in the primary search, the Science Citation Index ‘Cited Ref Search’, PubMed ‘Related Articles’ feature, personal file on living kidney donors, abstracts from recent American Society of Nephrology meetings and internet searches using Google.
Data abstraction and analysis
For each of the included study, the following information was abstracted: study type, study focus, status of publication, language of publication, country where the study was conducted and year of publication. For surveys, the number of potential participants contacted (companies, donors or potential donors), response rate, characteristics of participants and instrument(s) used were also abstracted. Information related to insurability was collected in a descriptive fashion. Two reviewers (RCY, HTP) abstracted the data independently, with disagreements resolved by consensus. Due to heterogeneity in study design, the results were not combined statistically using metaanalysis. Descriptive statistics were calculated using SPSS 14.0 for Windows (Release 14.0.0, SPSS Inc., Chicago, IL) and reported as means and standard deviations.
In total, 107 citations were identified from the bibliographic database searches. After duplicate citations were removed, 76 articles were retrieved, translated and reviewed in full text. In one case, the same study was published in two languages, so the more comprehensive version (in German) was used. (8, 9) In total, 22 citations were deemed relevant, but only 10 contributed original data (8, 10–18). The secondary search yielded another 13 studies (4, 19–31) (Figure 1).
Description of studies
The 23 studies included summarized the experiences and opinions of 2067 living organ donors, 385 potential donors, as well as 239 responses from insurance companies. The most common design were surveys, six of insurance companies and 12 of potential or actual donors. One study was presented at a recent meeting (May 2006) but not yet published (26). The other studies were published from 1972 to 2006, predominately in the English language; 15 were published in transplant journals, four in urology journals, three in nephrology journals and one in a general medical journal. The studies originated from five countries, including the United States (17 studies), Germany (3 studies), the United Kingdom, Japan and Canada (one study each) (Table 1). Insurability was the main focus in only seven of the 23 studies.
Table 1. Characteristics of insurability studies of living organ donors
First author (Ref No.)
“n” with data
Resp. rate (%)
QOL = quality of life; NR = not reported; n/a = not applicable.
Based on our primary questions and a priori hypothesis, the results were categorized into four main themes:
1. Does Becoming a Living Organ Donor Affect One's Ability to Obtain or Maintain Insurance?
• Studies of insurance companies (Table 2)From 1972 to 2003, five studies of life insurability were done by mailing questionnaires to major insurance companies in the United States (11, 12, 14, 26) and the UK (7). Response rates ranged from 42% to 100%, with a total of 181 responses obtained. 97% to 100% of the companies which responded were willing to provide new life insurance policies to living kidney donors, and 71%–100% would not charge a higher premium.Similarly, two studies of health insurability were done in 1996 and 2003, with a total of 48 responses. One was done in the United States (17) and one in the UK (11), with response rates of 42% and 86%, respectively. All of the responding companies indicated they would provide new health insurance coverage to living kidney donors, provided they were healthy at the time of application. Moreover, 2%–33% of the companies would charge a higher premium, and up to 33% would stipulate the exclusion of donation-related health problems.One US study directly assessed life insurability after right-hepatic-lobe living donation, by requesting insurance quotes from 10 companies, using two fictitious donor profiles differing only in that one had undergone right-hepatic-lobe living donation 12 months prior (14). Even though the Donor Profile had no donation-related complications, one of the 10 companies contacted still would not insure the living liver donor, while three (30%) would charge a higher premium.
• Self-reported experience of living organ donors (Table 3)From 1982 to 2005, seven studies assessed a total of 1188 living kidney donors on average 0.5 to 7.4 years after donation (range 3 months to 31 years), and collected information on insurability and insurance premiums (8, 19, 21, 22, 24, 27, 28).An early study of 536 kidney donors found that 4.2% had difficulty obtaining or maintaining life insurance, 2.3% disability insurance, and 4.2% health insurance (28). In a comparative study between two surgical techniques for living kidney donation, 9 of the 98 (9%) donors who underwent traditional flank-incision nephrectomy between 1996 and 2001 had difficulties with insurance, compared to none of the 41 donors in the new mini-incision group (24).In 2003, a group studied 174 kidney donors and found for 6 (3%) their predonation concern about future life insurability came true after donation (19). A German study from the same year found 11% of 58 donors encountered problems with their existing health insurance, even though only 42% notified the insurance companies (8).Another study of 167 kidney donors found 15 (9%) reporting that donation had a negative impact on their ability to obtain health, life or disability insurance (27). This study was replicated by another group in 2005, and again, 8% of 87 living-related kidney donors reported similar negative impact on insurability (21).As for the impact of living organ donation on insurance premiums, two early studies found that 96%–98.5% of living kidney donors with existing life insurance reported that no change in insurance premiums occurred after donation (22, 28). In a more recent study, none of the 58 living kidney donors reported an increase in their life insurance premiums, but the authors also noted that the majority of donors (61%) did not report their donation to the insurance company (8).
• Experience of transplant centersIn a recent survey of kidney and liver transplant centers in the United States, 2% of centers reported their donors having been denied health insurance after donation (47).
12% worried about having difficulty obtaining life insurance
In a random telephone survey of households in Maryland, the presence or absence of health insurance coverage was not associated with the respondent's willingness to donate a kidney to a sibling (adjusted odds ratio 1.5; 95% CI 0.6, 3.8) (10).
Concern about health insurability in actual kidney donors was assessed in six studies. A 1998 survey found only 1 of the 73 donors expressed concern about his health insurance premium. However, in three large studies conducted in the United States, Japan and Germany, with data from a total of 699 donors, 11%–13% reported significant levels of stress over future health insurability (20, 23, 25).
Concern about life insurability was assessed in two studies. A Canadian study found 12% of the 104 kidney donors worried that they would have difficulty obtaining life insurance (30). In a 2003 survey, 14% of the 174 kidney donors expressed concern about future difficulties obtaining life insurance, and for 3% their concern materialized. Of note, donor concern about insurability was significantly underrecognized by the recipients, as well as by other family members or friends closely involved in the donation process (p < 0.01) (19).
Among living liver donors, concern about future insurability was not directly measured. In one study, 15 adult-to-pediatric liver donors were interviewed, and three donors maintained unrewarding employment in order to continue existing health insurance coverage (13). However, it was not clear how much of their fear of losing insurance coverage was because of their recipient children.
3. Does Concern About Insurability Constitute a Barrier to Living Organ Donation?
In a large survey of 536 living kidney donors, it was found that donors whose insurance premiums increased after donation were less likely to reaffirm their decision to donate (p = 0.0001) (28). Another survey of living kidney donors determined that up to 11% of the 524 respondents had significant concern about insurability and 4% regretted their decision to donate, but the relationship between insurability concern and willingness to donate again was not explored (25).
In the recent North American Transplant Coordinators Organization (NATCO) Living Donor Insurability Survey, 39% of transplant centers reported having had donors decline donation for fear of future medical problems related to lack of health insurance (26).
4. Are There Differences Between Countries with Different Health Care Systems?
The number of included studies (most of which were from the United States) was insufficient to answer this question using the statistical technique of metaregression. Nonetheless, it did appear that the observed findings around insurability were consistent across countries with different health care systems and social support services. In surveys of the insurance industry, companies in the United States and the UK were equally willing to provide life and health insurance to living kidney donors (11, 15–18, 29). In follow-up studies of living kidney donors, difficulty obtaining or maintaining insurance was reported by donors in the United States as well as Germany (21, 64–67). Similarly, insurance premiums did not increase following kidney donation for American and German donors (68–70). Finally, similar proportions (11%–14%) of kidney donors from the United States, Japan, Germany and Canada all identified insurability as a source of concern (19, 20, 23, 25, 30).
Although research in this area dates back to 1972, there remains a paucity of information on donor insurability and whether it constitutes a barrier to living organ donation. Moreover, the results of the available studies may contain a significant amount of bias, due to the methodology used. Despite reassuring results from surveys of insurance companies over the past three decades, life, disability and health insurability remains an issue for some living organ donors, and is a potential barrier to donation.
Strengths and weaknesses of this review
This comprehensive review summarized all available data on insurability and its effect on living donors of all organ types. The 23 studies included were published over a 35-year period, and contained data from countries with different health care systems and social support services.
Previous reviews on this topic were narrative in nature, focused mainly on kidney donation and provided little or no information from the perspective of the donors (6, 32–34). Our search was systematic, and targeted all types of living organ donation. By adding the secondary search, we were able to include 13 more studies which were not identified on bibliographic database searches. Publication bias was minimized by the inclusion of non-English and yet-unpublished studies.
However, as with all systematic reviews, the strength of the conclusions depends on the quality of the primary studies. The majority of studies included in this review were surveys, with less-than-ideal response rates. Significant selection bias may also exist as most studies were conducted retrospectively or cross-sectionally, resulting in many eligible participants not included in the studies. The retrospective nature of most studies also makes biased recall a real possibility.
Since insurability was not the primary focus of the donor follow-up studies, there may have been significant measurement and reporting biases. Finally, no control groups were used in most studies, making it difficult to assess the true magnitude of the effect living organ donation has on insurability. A proportion of study participants would have encountered difficulties with their insurance even if they had not become living organ donors.
As for surveys of the insurance companies, most authors took measures to ensure there was a representative sample. However, many of these companies were surveyed on multiple occasions and the summarized results do not represent independent responses. Also, opinions expressed by companies may not reflect true underwriting practices, nor are these opinions applicable to donors who develop complications or long-term sequelae after donation. For example, donating a kidney may increase one's blood pressure and risk of hypertension (35). While it is well known that insurance companies consider blood pressure in their underwriting process (36), how such information is dealt with in the context of organ donation is not known.
Finally, there were only limited data on insurability of living liver donors, and none on living donors of lung or other organs. Future studies will help clarify how insurability is affected by these types of donation.
Implication of findings
We made some interesting observations, most notably the discrepancy between results of insurance company surveys and follow-up studies of living organ donors.
• Living organ donors do encounter insurability issuesFollow-up studies of living organ donors suggested that in most cases, insurance premiums would not increase after donation (22, 28, 31). Repeated surveys of insurance companies over the past three decades also showed consistently that almost all life and health insurance companies would insure living kidney donors, and only a minority of companies would charge higher premiums (11, 15–18, 29).However, response rates of the insurance industry surveys have dropped over the years, leading an expert in this area to question if insurance companies are becoming more uncomfortable with this issue (18). An official of the California State Health Services, familiar with the insurance industry, also commented recently that risks to life and disability insurability indeed exist for living organ donors and should not be minimized (37).Certainly, anecdotal reports (29), our own clinical experience and that of other transplant professionals (26) seem to suggest insurability is a real issue facing at least some donors. In support, this review also showed that in follow-up studies, 3%–11% of living kidney donors reported difficulties obtaining or maintaining insurance after donation (8, 19, 21, 24, 27, 28). Moreover, the ‘insurance quote experiment’ by Nissing and Hayashi (14) showed that problem with insurability was not limited to living kidney donation.
• Insurability of living organ donors has important consequencesNot only do living organ donors encountered difficulties obtaining or maintaining insurance (8, 14, 19, 21, 24, 27, 28), insurability issues also caused significant stress for 11%–13% of living kidney donors, and this percentage appears to be consistent across countries with different health systems, and between life and health insurance (19, 20, 23, 25, 30). In addition, concern about insurability was underrecognized by even those close to the donors (19), so it is possible that health professionals also underestimated the impact of such concern on living organ donors.In this review, we also presented some evidence that concern about insurability may negatively influence one's decision to become a living organ donor (26, 28). As living organ donation is promoted and rates increase, it is important to identify potential barriers to donation, and facilitate their removal.
• Informed consent, nonmaleficence and counseling before donor evaluationDonors are heroic people, who accept personal risks for the benefit of others. However, just like any other medical intervention, donors should be provided with all the information they need to make an informed decision to donate. While the short-term risks of living organ donation are reasonably well known, the same cannot be said about the long-term medical, psychosocial and financial consequences of living organ donation, all of which can impact donors' ability to obtain and maintain life, disability and health insurance. Thus, many experts and organizations have advocated disclosure of known and unknown risks to future insurability to potential donors as part of the informed consent process (37–41).It has been reported that many living kidney (12, 42–44) and liver (45, 46) donors arrived at the decision to donate before they even learned about all the potential risks involved. At first glance, this makes informed consent all but impossible, and renders futile any effort to better understand risks associated with living organ donation. However, even if donors are willing to accept the risks of noninsurability and/or higher insurance premiums, transplant professionals still have an ethical obligation to balance donor autonomy with nonmaleficence, and ensure that donors do not suffer unnecessary stress or financial penalty (47–53).Potential donors also need to be informed that future insurability may be affected even before donation occurs. Previously unknown diseases or conditions may be discovered during donor evaluation (e.g. ovarian cancer found on ultrasound or HIV identified on routine serology screening), with profound consequences on future insurability. For potential donors with exiting insurance coverage, verification with their insurance company is needed to ensure the policy will cover complications and long-term sequelae resulting from elective surgeries such as organ donation.
• Providing life, disability and health insurance to donorsNot surprisingly, many experts in the area have long advocated provision of insurance to living organ donors (32, 38–54).In the United States, there is already a commercial insurance product specifically designed for living kidney donors. The South-Eastern Organ Procurement Foundation (SEOPF) operates a registry available to all transplant centers. Living kidney donors at participating centers are eligible for an optional comprehensive insurance policy, which covers accidental death related to donation, as well as income loss and medical expenses related to complications. The policy, with a total benefit of US$250,000, is underwritten by the American International Group (AIG), and requires a one-time fee of US$550, payable by the donor or the transplant center (59, 60). To date, two claims have been settled to the satisfaction of donors (26, 59).In other countries, living organ donors may already be covered under state-run social insurance against medical costs, lost income, and even out-of-pocket expenses. In Switzerland, social insurance covers medical costs as well as income loss related to organ donation (61). In the UK and Sweden, out-of-pocket expenses and income loss related to donation are reimbursed by the state (57, 62, 63) A similar reimbursement program was recently introduced in parts of Canada (64).
• Implication for policymakersAs a society, we have much to gain from living organ transplantation. Recipients of living kidney donation enjoy improved survival, enhanced quality of life and increased likelihood of return to the workforce (65), not to mention that living donor kidney transplantation has been shown to be cost saving for the society (66). Living transplantation of liver and other organs shortens waiting lists for deceased donor organs, and can potentially be life saving and cost effective (67). Therefore, it is in our best interest to promote living organ donation, by identifying and removing barriers to donation.Furthermore, it may be socially unjust for living organ donors to suffer higher insurance premiums or be denied insurance more often than other members of the society. For instance, living kidney donors have been shown to live longer (68, 69), and have lower risks of long-term disability (70), when compared with the general population. (Obviously, more research is needed on other types of living organ donation, which should to be considered separately.)Perhaps, the best way to protect living organ donors against insurability issues is through the introduction of fair health and underwriting policies. As mentioned above, reimbursement of donation-related expenses and income loss is already practiced in countries like Sweden, Switzerland, the UK and parts of Canada. Such coverage protects against loss of income better than commercial disability insurance, which often carries an elimination period of 2–3 months.In the United States, the Organ Donation and Recovery Improvement Act was passed in 2004, allowing public or private entities to reimburse travel, subsistence and incidental non-medical expenses incurred by living organ donors (71). A recently introduced bill, the Living Organ Donor Protections Act, was designed to ensure that donors are not denied coverage nor charged discriminatory premiums when applying for health insurance.Similar policies can be considered in other jurisdictions to ensure living organ donors are treated justly, and prevent insurability issues from becoming a barrier to donation.
• Future ResearchAll available studies of insurance companies were on the basis that donors remained healthy after donation. However, inevitably some living organ donors will experience or develop complications. Further research is urgently needed to determine how insurability and premiums will be affected when donors develop complications.A better understanding of the true extent of insurability problems faced by living organ donors will come from large, prospective, multicentre cohort studies with appropriate controls (people with proven health) and adequate follow-up. Such studies should aim to limit participation and recall biases, and minimize loss to follow-up. Knowledge gathered from such studies will also help improve donor counseling and informed consent.Research into the process by which individuals arrive at the decision to become living organ donors will also be needed to determine if insurability represents a barrier to donation. Such research will also help identify donors most in need of education and support, particularly those who arrived at the decision to donate without having considered all available information.
This review was supported by the Canadian Institutes of Health Research (CIHR), the Physicians Services Incorporated Foundation and the Canadian Council for Donation and Transplantation. Dr. Yang was supported by a Kidney Foundation of Canada Biomedical Fellowship award. Dr. Klarenbach was supported by a Kidney Foundation of Canada Biomedical Scholarship. Dr. Garg was supported by a CIHR Clinician Scientist Award. We acknowledge the work of Jan Challis, MLIS who provided administrative help. We thank Katherine Clarke for her assistance with identifying relevant articles.