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The dilemma of unintentional discovery of misattributed paternity in living kidney donors and recipients

Schroder, Nina M

Current Opinion in Organ Transplantation: April 2009 - Volume 14 - Issue 2 - p 196–200
doi: 10.1097/MOT.0b013e328327b21f
Ethical, legal and fi nancial considerations: Edited By Kathy Coffman
Free

Purpose of review To discuss the issue of misattributed paternity and highlight the complex implications transplant centers must consider when this unsought information is discovered. Policies should be implemented to guide transplant centers in consistent and ethical treatment of this sensitive issue. Effective policy development will require close examination and transparent discussion by the transplant community.

Recent findings Despite the fact that little attention has been given to the discovery of misattributed paternity in the field of transplant, transplant centers do encounter this dilemma. The burden of deciding how to treat the information is significant and reaching consensus can be difficult. Recent findings suggest that policy implementation regarding this issue would help to guide practice for professionals who encounter discovery of this unsought information.

Summary This review explores the complex considerations that must occur when misattributed paternity is unintentionally uncovered in living donor–recipient pairs and recommends that the transplant community pursue policies to guide practice in the treatment of this issue.

Department of Social Work, University of Maryland Medical Center, Baltimore, Maryland, USA

Correspondence to Nina M. Schroder, MSW, LCSW-C, Division of Transplantation, University of Maryland Medical Center, 29. S Greene Street, Suite 200, Baltimore, MD 21201, USA Tel: +1 410 328 2996; e-mail: nschroder@smail.umaryland.edu

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Introduction

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.

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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 [2].

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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 [4].

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].

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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 [16]. 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 [8]. Results from a 1989 survey of nondoctoral genetic counselors reflected a perspective similar to that of the medical geneticists [17].

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 [10].

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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 [18]. 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 [5] and may never actually materialize [2]. 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].

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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)

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Previously reported misattributed paternity cases in living donor kidney transplantation

Wright et al.[4] and Soderdahl et al.[19] 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.

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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].

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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 [18]. The belief is that disclosure of the information would result in harmful consequences and should, therefore, be avoided.

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Family preservation

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 [5].

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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].

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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 [5].

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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].

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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.

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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.

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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 [4]. 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 [4]. 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.)

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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 [5][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].

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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.

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Informed consent

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.

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Additional considerations

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) [24]. 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.

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Conclusion

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.

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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).

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Keywords:

informed consent; kidney transplants; living donors; misattributed paternity

© 2009 Lippincott Williams & Wilkins, Inc.