The unintentional discovery of misattributed paternity through routine human leukocyte antigen (HLA) testing in living donor–recipient pairs is a complex issue with potential serious ethical and practical implications for both patients and transplant centers. Yet, despite the growing number of living donor kidney transplants (LDKTs) and the potential consequences that accompany the handling of this unsought information, the misattributed paternity issue has received very little attention in the transplant literature.
Misattributed paternity rates
There is a paucity of current verifiable data about misattributed paternity and its rate of occurrence. Genetic textbooks and DNA studies cite a 10% incidence of misattributed paternity. A range of misattributed paternity rates are noted to be between 1 and 30% between different cultures, groups, and countries [1–3]. It has been argued that the incidence of misattributed paternity is irrelevant and does not mitigate the ethical burden of how to treat the information if and when it is discovered .
The dilemma of unintentional discovery of misattributed paternity
The dilemma of the discovery of misattributed paternity arises when clinicians or researchers collect sensitive genetic material that may have significant meaning to patients beyond the scope of the intended clinical or research question and are then faced with the burden of deciding of whether to disclose the information. This dilemma has been most often reported in the genetic field, but is also possible in LDKTs. This issue arises in living kidney donor–recipient pairs when HLA antigen matching reveals less than three antigens shared between a father and child who believe to have a biological father–child relationship. As all biological parents and children share at least three of six antigens, a less than three match challenges the genetic nature of their relationship .
Though the issue has received little attention in transplant, it has been studied and debated in the genetic counseling field in which the common scenario is that of a couple undergoing carrier screening after their child has been diagnosed with an autosomal recessive condition [2,5–11]. Unintentional discovery of unsought information, such as misattributed paternity, is also beginning to receive more attention in the growing field of genetic research, as researchers examine a plethora of genetic markers and their links to diseases [12–15].
Misattributed paternity perspectives in genetic counseling
In order to help frame consideration of the misattributed paternity dilemma in transplant, it is valuable to first review how the genetic counseling field has approached this complex issue. Previous study of professional attitudes in genetic counseling indicated a wide acceptance of nondisclosure of misattributed paternity [6–9,16,17]. In 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine recommended that only the mother be informed of the misattributed paternity information . Results from past surveys of geneticists and genetic counselors support this position. In an international survey of over 1000 medical genetic professionals (MDs and PhDs) conducted in 1985–1986, 96% of respondents indicated the belief that ‘the protection of the mother's confidentiality overrides disclosure of true paternity.’ Eighty-one percent of the 682 survey participants said that they would only disclose the information to the mother, 13% would lie about the findings, and 2% would tell the couple that a gene mutation was responsible for the disorder . Results from a 1989 survey of nondoctoral genetic counselors reflected a perspective similar to that of the medical geneticists .
Although these previous surveys demonstrated overwhelming support for nondisclosure, a more recent survey suggests a shift in attitudes. A 2006 survey of 273 genetic counselors from the United States and Canada indicated little consensus about how the misattributed paternity information should be treated. Furthermore, 97.2% indicated that their institution did not have a policy to govern the disclosure of the misattributed paternity. The authors concluded that institutional guidelines and/or a professional position statement regarding disclosure of misattributed paternity would help to guide practice .
Nondisclosure and disclosure arguments discussed in genetic counseling
The rationale for nondisclosure of misattributed paternity noted in the genetic literature is rooted in the principle of nonmaleficience or the duty to do no harm . The assumption is that disclosure of the information to the father would infringe on the mother's confidentiality and result in harmful consequences to the mother, child, and overall family integrity. Protection of these entities is valued over the medical professional disclosing the truth and father's right to know his genetic information and its meaning in relation to the child [7–9,16]. However, nondisclosure has been criticized as being paternalistic and unethical [2,5]. Critics of nondisclosure argue that the justification for this practice is based on a paternalistic philosophy that aims to protect patients from hypothetical harms that are not empirically proven  and may never actually materialize . They argue that nondisclosure is unethical in that it infringes on a patient's ability for autonomous decision-making, compromises the physicians' duty to tell the truth to their patients, and undermines individuals' right to their genetic information that can be relevant to their future decision-making [2,5]. These critics argue that misattributed paternity information should be disclosed to both the mother and father, as they are both patients with equal rights to results of their testing [2,5].
Misattributed paternity in living donor kidney transplantation
Considering that only two case reports have been published in the transplant literature [4,19], it can be assumed that this issue has not been experienced by many transplant centers; however, results of a survey of US transplant centers suggest otherwise.
In 2007, the University of Maryland Medical Center surveyed US transplant centers to determine the incidence of the discovery of misattributed paternity information by centers in living donor–recipient pairs. The results showed that 70% of the 54 centers that participated had experienced cases of misattributed paternity. Similar to results of the recent survey of genetic counselors, transplant centers lacked consensus of how to treat this issue. Only 26% indicated that they had a policy on how to treat the information after discovery and those policies were widely variable. Furthermore, only 24% of the centers reported that they include the possibility of misattributed paternity discovery as part of the informed consent process prior to HLA testing. (N. Schroder et al., in preparation)
Previously reported misattributed paternity cases in living donor kidney transplantation
Wright et al. and Soderdahl et al. both published case reports about the discovery of misattributed paternity in living donor–recipient father–child pairs at their centers. In both of these cases, transplant teams engaged in thoughtful discussion and debate and considered material discussed in the genetic counseling literature [2,5,8,17]. However, unlike the common approach of nondisclosure reported in genetic counseling, both transplant teams found that that the arguments for disclosure outweighed those for nondisclosure. In these transplant cases, the misattributed paternity information was revealed to both the donors and the recipients prior to the transplants. The transplants proceeded and all patients expressed gratitude to the transplant centers for being truthful and disclosing the information. The differences in the transplant teams' conclusions on how to proceed compared with the nondisclosure precedence forth in genetic counseling may reflect the unique contexts of these clinical scenarios such as the differences in the patients involved, the purpose of the testing, and the degree and amount of risks patients are assuming.
Consideration of nondisclosure and disclosure arguments in living donor kidney transplantation
In the absence of institutional policies or knowledge of patients' preferences for how the information should be treated, transplant professionals technically assume proprietorship of the information and are then faced with the burden of deciding whether or not to disclose the information to patients. They must consider the potential implications for both the patients and the transplant center. Below is an overview of the main arguments for and against disclosure that have been discussed in the literature [2,4,5,19].
Arguments for nondisclosure
The arguments considered for nondisclosure are similar to what is discussed in the genetic literature as they are based on the principle of nonmaleficience or the duty to do no harm . The belief is that disclosure of the information would result in harmful consequences and should, therefore, be avoided.
Disclosure of the misattributed paternity information to both the donor and recipient may create interpersonal distress and compromise family harmony [4,19]. It is possible that if the mother and father are still married, the disclosure of the information may cause marital problems and disrupt family harmony and the integrity of relationships. However, as critics of nondisclosure point out, these harms are hypothetical and it is also possible that disclosure may actually benefit the family and provide clarity to the individuals involved [4,5]. In addition, it has been argued that preservation of the family is ‘the proper goal of marriage and family counselors,’ not the goal of medical professionals particularly when deception of rightful parties is a necessary part of achieving this goal .
Maintenance of patient confidentiality
It can be argued that revealing the misattributed paternity information would be a breach of each patient's confidentiality as both patients' results are needed to disclose misattributed paternity. However, both patients consented to testing that requires interpretation of each patient's results together in order to determine their degree of compatibility with one another. Therefore, both parties are entitled to this information [2,5,19].
Protection of mother's right to privacy
Disclosure of the misattributed paternity information to the donor and recipient may also be considered a violation of the mother's right to privacy as the disclosure directly implicates her past actions. However, the mother is not a patient of the transplant center and, therefore, the center is under no obligation to protect her privacy. Furthermore, it can also be argued that it is not the transplant center's responsibility to mitigate consequences of the mother's voluntary choices .
Erosion of trust in physician–patient relationship
If the patients were not forewarned of the potential discovery of this information, they may be upset with the transplant center for disclosing the information and causing disruption in their lives without consenting to this risk [2,4,19].
Arguments for disclosure
Arguments in favor of disclosure value respect for patient autonomy, truth-telling, and individuals' rights over that of paternalistic protection from hypothetical harms.
Respect for patient autonomy and informed consent
LDKTs are voluntary procedures in which both the donor and recipient assume potentially serious medical and psychosocial risks. Full disclosure of all relevant information related to this procedure is necessary in order for autonomous individuals to make an informed decision to undergo surgery and assume these risks [20–22]. It cannot be assumed that the misattributed information or risk of its discovery would not affect a donor's decision-making about proceeding with the transplant, as it has been shown that degree of biological relationship can influence donors' decisions [22,23].
Recipient decision-making may be affected as well. It is possible that the messages recipients receive from the medical community and elsewhere encourage the testing of living-related donors, partly because of the greater likelihood of compatibility. Therefore, recipients may feel more confident in their decision to accept a kidney from their child or parent rather than an unrelated donor and have higher expectations for a positive outcome.
Duty to tell the truth
Truth-telling is a fundamental element in maintaining trust in the physician–patient relationship. Withholding misattributed paternity information or the risk of its discovery from patients considering living kidney donor transplants could also be construed as deceptive and coercive . If the patients learn of the misattributed paternity information in the future, they may question the transplant centers' motives for withholding the information and may also question the truthfulness of all previous and future communications. Therefore, nondisclosure could erode trust in the physician–patient relationship [2,4,5]. It is also possible that failure to tell the truth can result in consequences for the transplant center such as a tarnished reputation and/or legal action from disgruntled patients who believed they were deceived . This situation could occur if patients feel that they would not have proceeded with the surgery had they known the information or discover that the option of an LDKT was withheld from them (e.g., the pair was a viable match but were told otherwise.)
Right to genetic information
It has been argued that individuals have the right to know their genetic heritage and that medical professionals should not be the proprietors of an individual's genetic information [2,4,5]. There is growing discussion that knowledge of one's genetic information can have great impact on an individual's medical and life choices and that patients should be made aware when information is available that can inform their understanding of their genetic heritage [2,4,5,14,19,24,25].
Call for policy to guide practice
Indeed, the discovery of misattributed paternity can have implications for both patients and transplant centers and the consideration of arguments for and against disclosure to determine how to proceed after discovery is, therefore, a mighty burden to assume. Due to the complexity of the dilemma and these potentially serious implications, policies should be implemented to consistently and ethically guide practice for transplant professionals when confronted with this complex and sensitive issue. The absence of a policy to guide practice may result in transplant centers engaging in intense ethical discussions in which consensus about disclosure may not be reached. Consequently, transplant centers may be tempted to ignore the issue or proceed in a manner that compromises patient autonomy and/or the principle of truth-telling in order to avoid the challenges of confronting this dilemma. If a policy is in place, transplant centers would be able to rely on the policy for reassurance and it could help ensure that all cases are approached consistently and ethically.
Current attitudes of multidisciplinary transplant professionals appear to support such policy implementation. A recent article reported the results of a discussion from a transplant ethics course in which two hypothetical case scenarios of misattributed paternity were presented to an audience of 100 transplant professionals. The audience responses indicated that there was a lack of consensus regarding how to treat the information, though the most preferred option was for transplant teams to decide on a case-by-case basis. Ninety-one percent indicated that they would be in favor of an institutional policy that informs living donors of the potential for discovery of misattributed paternity [26•]. These results speak to the audience's recognition of the complexity of the issue, the burden of decision-making about disclosure, and the importance of having a policy in place to guide practice.
A policy that includes the potential risk of misattributed discovery in the informed consent prior to HLA testing is a possible way to avoid a thorny ethical dilemma later if misattributed paternity is discovered. Such a policy would demonstrate respect for patient autonomy, truth-telling on behalf of medical professionals, and patients' right to access their genetic information. An informed consent policy prior to testing is supported by professionals in both transplant [4,19,26•,27] and the genetic fields [2,12–14]. Most of these professionals suggest that patients should be informed of this risk prior to HLA testing and allowed the opportunity to indicate how they would like the information to be handled if/when it is discovered. This approach provides donors and recipients the opportunity to exercise autonomy and consider whether they want to assume this risk and have access to the information. Furthermore, such a policy could instruct the transplant center on how to treat the misattributed paternity if it is uncovered.
However, it should be acknowledged that allowing patients to choose a nondisclosure preference does not eliminate the potential for the information to still be revealed to them. For example, the meaning of a less than three antigen match could be revealed to the patients in discussions with other recipients or donors, or through other sources (i.e., internet, physician outside of the transplant center, etc.) In addition, if a donor's and recipient's preferences are incongruent, one patient will be aware of the true nature of their relationship and might disclose the information to the other patient or family members, who could subsequently share the information. Therefore, transplant centers should be clear that the risk of the information being revealed exists regardless of a patient's preference.
Although an informed consent policy may eliminate transplant centers assuming the dilemma of disclosure vs nondisclosure and can ensure a consistent ethical approach, there are several issues that are in need of further study and discussion as policies are considered. Informed consent policies are reasonable when the recipient and donor are both competent adults capable of autonomous decision-making. However, transplant centers will also need to consider how the policies will be structured in pediatric cases when one of the patients is a minor and unable to provide informed consent. Discussion of this issue and others related to pediatric cases is necessary and beyond the scope of this article. In addition, although the mother is not a patient of the transplant center, she may still be affected by the disclosure and informed consent policy information. Consequently, centers may wish to consider this impact when developing the details of their policies.
Finally, although this article has focused solely on the topic of misattributed paternity and the scenario in which only the mother is aware of the true paternity of the child, other scenarios may exist. Both parents may be aware of the existing nonbiological relationship but withhold the information from the child in such cases as covert adoptions, the use of assisted reproductive technology (ART) in which donor sperm, oocytes, or embryos are used at conception [28,29], or in instances in which grandparents, step-parents, or other family members secretly assume the role of one's parent(s) . Considering these alternative scenarios, transplant centers should also be aware that discovery of misattributed maternity is also possible and should incorporate this potential scenario into their policies.
The discovery of misattributed paternity is a complex issue that can have serious implications for patients and transplant centers. Recent findings in both transplant and genetic counseling acknowledge the complexity of deciding whether or not to disclose the information to patients, and indicate an overwhelming desire for policy implementation to help guide practice. A policy of informing donors of the risk of misattributed paternity discovery prior to HLA testing should be considered for transplant centers. Additional examination and discussion is necessary within the transplant community as policies are developed to guide clinical practice.
References and recommended reading
Papers of particular interest, published within the annual period of review, have been highlighted as:
• of special interest
•• of outstanding interest
Additional references related to this topic can also be found in the Current World Literature section in this issue (p. 217).
1 MacIntyre S, Soonman A. Nonpaternity and prenatal genetic testing. Lancet 1991; 338:869–871.
2 Lucassen A, Parker M. Revealing false paternity, some ethical considerations. Lancet 2001; 357:1033–1035.
3 Anderson KG. How well does paternity confidence match actual paternity. Curr Anthropol 2006; 47:513–520.
4 Wright L, MacRae S, Gordon G. Disclosure of misattributed paternity
: issues involved in the discovery of unsought information. Semin Dial 2002; 15:202–206.
5 Ross LF. Disclosing misattributed paternity
. Bioethics 1996; 10:114–130.
6 Lucast EK. Informed consent
and the misattributed paternity
problem in genetic counseling. Bioethics 2007; 21:41–50.
7 Wertz DC, Fletcher JC. Ethics and medical genetics in the United States: a National survey. Am J Genet 1988; 29:815–827.
8 Wertz DC, Fletcher JC, Mulvihill JJ. Medical genetics confront ethical dilemmas: cross cultural comparisons among 19 nations. Am J Hum Genet 1990; 46:1200–1213.
9 Wertz DC, Fletcher JC. Privacy and disclosure in medical genetics examined in an ethics of care. Bioethics 1991; 5:212–232.
10 Zelenietz SA, Harrison C, Trevors C, et al
. Disclosing misattributed paternity
: a survey of genetic counselors in the United States and Canada. J Genet Couns 2007; 16:17.
11 Turney L. The incidental discovery of nonpaternity through genetic carrier screening: an exploration of lay attitudes. Qual Health Res 2005; 15:620–634.
12 DeCamp M, Sugarman J. Ethics in population-based genetic research. Account Res 2004; 11:1–26.
13 Clayton EW. Incidental findings in genetics research using archived DNA. J Law Med Ethics 2008; 36:286–291.
14 Shalowitz DI, Miller FG. Disclosing individual results of clinical research: implications of respect for participants. JAMA 2005; 294:737–740.
15 Pullman D, Hodgkinson K. Genetic knowledge and moral responsibility: ambiguity at the interface of genetic research and clinical practice. Clin Genet 2006; 69:1999–2203.
16 Committee on Assessing Genetic Risks, Institute of Medicine. Assessing genetic risks. Andrews LB, Fullarton JE, Holzman NA, Motulksy AG, editors. Washington, DC: National Academy Press; 1994. 278 pp.
17 Pencarinha DF, Bell NK, Edwards JG, et al
. Ethical issues in genetic counseling: a comparison of MS counselor and medical geneticists perspectives. J Genet Couns 1992; 1:19–30.
18 Beauchamp TL, Childress JF. Principles of bioethics. 5th edition New York: Oxford University Press; 2001, 57–272.
19 Soderdahl DW, Rabah D, McCune T, et al
. Misattributed paternity
in a living related donor: to disclose or not to disclose? Urology 2004; 64:590.
20 Wright L, Faith K, Richardson R, Grant D. Ethical guidelines for the evaluation of living organ donors. Can J Surg 2004; 47:408–413.
21 The Ethics Committee of the Transplantation Society. The consensus statement of the Amsterdam forum on the care of the live kidney donor. Transplantation 2004; 78:491–492.
22 Olbrisch ME, Benedict SM, Haller DL, et al
. Psychosocial assessment of living organ donors: clinical and ethical considerations. Prog Transplant 2001; 11:40–49.
23 Shover L, Streem SB, Boparai N, et al
. The psychosocial impact of donating a kidney: long-term follow up from a urology-based center. J Urol 1997; 157:1596–1601.
24 Bellis MA, Hughes K, Hughes S, Ashton JR. Measuring paternal discrepancy and its public health consequences. J Epidemiol Community Health 2005; 59:749–754.
25 Ethics Committee of the American Society for Reproductive Medicine. Informing offspring of their conception by gamete donation. Fertil Steril 2004; 81:527–531.
26• Griffin MD, Prieto M. Case studies in transplant ethics. Transplant Rev 2008; 22:178–183. This article is the first to highlight attitudes of multidisciplinary transplant professionals regarding the complexity of the misattributed paternity
issue and the desire for an informed consent
policy to guide practice.
28 U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. Assistive Reproductive Technology success rates: National summary and fertility clinic reports. http://www.cdc.gov/ART/ART2005/508PDF/2005ART508.pdf
. [Accessed 18 November 2008].
29 MacCallum F, Golombok S. Embryo donation families: mother's decisions regarding disclosure of donor conception. Hum Reprod 2007; 22:2888–2895.