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  • Richard Wenzel

NPEs, help your helpers

Updated: Jul 11, 2021

When truth is replaced by silence, the silence is a lie.

- Yevgeny Yevtushenko



As a young child, I was diagnosed with kidney disease. How or why did I get this illness? Who knows, but genetics may be involved. My mother told doctors that “there’s no family history of kidney disease”. As an adult I repeated my mother’s line, at least until recently; in 2020 I discovered that I am an NPE. I never knew my biological father, who died in 2006. I am searching for his medical records; perhaps he had kidney disease? Regardless, every Family Medical History (FMH) form I ever completed contains wrong information. So, what can be done now?


Dilemmas managing misattributed paternity (MP) - when an assumed biological parent(s) is discovered to be genetically unrelated – have confronted medical professionals for decades, if not centuries. Yet many NPEs’ experiences suggest that physicians, psychologists, and other health care providers currently lack:


- awareness of MP’s frequency, especially when uncovered by at-home DNA tests

- consensus regarding whether, how, when, and with whom to share MP information, and

- formal training of the needs, treatments, and other care decisions impacting NPEs.


A search of current medical literature offers little research or information discussing optimal methods to help individuals dealing with an MP discovery’s aftermath. In contrast, virtually any NPE discussion forum contains their disappointed, frustrated, or angry stories regarding the support (or lack thereof) received from clinicians.


To quote one medical journal’s article,(1) "There is controversy within the bioethical, medical, and research communities on how to handle this difficult situation [MP], and it is largely considered an unsettled debate."


The medical literature’s sparse MP information is often contradictory, difficult to enact in real-world settings, or largely out-of-date in this era of at-home DNA testing. Moreover, most available MP medical literature assumes a scenario of a young child unrelated to the father, rather than today’s increasingly widespread scenario of an adult uncovering the identity of their biological parent(s), often exposing long-hidden family secrets in the process.


The 1983 President’s Commission for the Study of Ethical Problems in Biomedical and Behavioral Research endorsed MP disclosure to both a woman and her partner, yet in 1994 the Institute of Medicine’s committee on assessing genetic risks recommended MP disclosure to a mother, but not her partner (2). In 2015, the American Society of Human Genetics and American College of Medical Genetics and Genomics jointly published a Position Statement (3), Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents, that states “.….we recommend that health-care providers avoid disclosure of misattributed parentage unless there is a clear medical benefit that outweighs the potential harms.” Yet how should such a recommendation be fulfilled in real life? What - exactly - constitutes a “clear medical benefit” or a “potential harm”? Whose benefit or harm? The biological parent, the person who falsely believes they are a biological parent, or the child(ren)? And a “harm” that occurs when: within a few weeks or decades later? These fundamental questions remain largely unanswered.


The American Medical Association’s Code of Ethics (4) says, “Except in emergency situations……withholding information without the patient’s knowledge or consent is ethically unacceptable.” Yet in the scenario of a married couple, who already have a child and are seeking genetic counseling or other health care services, exactly who is “the patient”? The mother? The man who mistakenly thinks that he is the biological father? The child? The family as a whole? The biological father, roaming out in the world, probably unaware that he may pass along a genetic disease to future children? The questions and ethical dilemmas are numerous, without easy answers.


A survey (5) of approximately 1000 geneticists and genetic workers gave a scenario when a married couple seeks genetic testing for their child and test results unexpectedly revealed that the child and the husband are genetically not related. Of the survey’s respondents:


- 96% stated that “protection of the mother’s confidentiality overrides disclosure of true paternity”

- among those protecting the mother, 80% reported that they would only tell the woman.

- 1 of 5 respondents stated they would “fudge the issue” or lie and say “the laboratory made a mistake”, among other falsehoods.


A different survey (6) of genetic counselors concluded that 96% would NOT disclose MP to a father.


Other articles argue that no right to know your genetic origins exists (7) or that “withholding some information is ethically justifiable” and “honesty is not always the best policy” (8).


I cannot help but observe that current literature often portrays maintaining a mother’s secret as ‘ethical’, yet offers no discussion of whether propagating a lie is ethical. Moreover, I have yet to find an article explaining how anyone’s long-term interests are served by silence; too many articles tacitly aim to relieve clinicians of their short-term dilemma, apparently in the hopes that someone else will reveal the truth in the future, as well as deal with the aftermath. Finally, I am dispirited that medical articles deem some - but not all - individuals as worthy of being told the truth.


Do these articles increase your confidence in your clinicians?


Importantly, these ‘deny truth’ approaches (even when the denial is well-intentioned) fail to acknowledge this reality: the power of knowledge has shifted from clinicians to patients. Historically, health care providers held information and decided whether, when, and with whom to share. No more. Today, MP information is unlikely to remain hidden forever. The truth will be disclosed. If not directly discovered by the clinician’s patient(s), then perhaps when a patient’s sibling, cousin, aunt, uncle, parent, etc., takes a DNA test and sets-off a cascade of truth-telling events. Or when a man reviews his child’s medical records, which he is legally allowed to do, and sees a note or test result indicating that he is not the biological father. Or when a determined relative constructs a family’s genetic tree and unravels a mystery. Just to name a few of the often unexpected methods truth finds an audience.


Clinicians concealing the truth today may ultimately find themselves in an uncomfortable environment, such as a courtroom, attempting to explain and justify their past actions. I predict that during the coming decade a physician, genetic counselor, or other clinician that withheld the truth will find themselves on the losing side of an expensive lawsuit (who knows, this may have already happened). Enough financial pain might motivate clinicians (and institutions) to re-evaluate their truth-telling convictions and formulate more effective and holistic approaches to navigate the difficult MP minefields; such approaches exist.


Until then, what can you do? Foremost, recognize that you may need to educate your health care professionals about MP issues, rather than them educating you. Whenever seeking help from a physician, psychologist, or other clinician consider asking:


1) what MP training they have and - if they have little-to-no training – could they refer you to a more knowledgeable provider,

2) whether incidental findings will be disclosed, specifically MP (other NPEs may exist in your family)

3) their professional thoughts as to the benefits and risks of MP disclosure to existing family members, newly identified relatives, and friends,

4) what treatment(s) the clinician may offer you and the rationale(s) for their choice,

5) whether the clinician knows of any MP or NPE research as well as if they would support or even initiate such research, and

6) if the clinician can direct you to MP or NPE advocacy or support groups.


Finally, NPEs should consider scheduling an appointment specifically to update and discuss previously submitted FMH forms. Clinicians’ decisions to offer or withhold certain health screening tests or treatments, among other important decisions, can be affected by FMH.


Accurate information is essential. If an NPE does not know their biological FMH or has obtained new FMH information, revise the form appropriately. In either instance, re-evaluate past medical decisions and whether a different course of action is now advisable.


As for me, I can now make better-informed medical decisions, as can my providers; this is progress of a kind. Yet this mess could have been avoided if my mother - may she rest in peace - had somehow found the courage to offer the truth.


Unlike my mother, clinicians still have the opportunity to demonstrate courage.



References:

1. Prero MY, Strenk M, Garrett J, Kessler A, Fanaroff JM, Lantos JD. Disclosure of Misattributed Paternity. Pediatrics. 2019 Jun;143(6):e20183899. doi: 10.1542/peds.2018-3899. Epub 2019 May 16. PMID: 31097466.

2. Hercher L, Jamal L. An old problem in a new age: Revisiting the clinical dilemma of misattributed paternity. Appl Transl Genom. 2016 Feb 1;8:36-9. doi: 10.1016/j.atg.2016.01.004. PMID: 27047759; PMCID: PMC4796701.

3. Botkin JR, Belmont JW, Berg JS, et al. Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents. Am J Hum Genet. 2015 Jul 2;97(1):6-21. doi: 10.1016/j.ajhg.2015.05.022. Erratum in: Am J Hum Genet. 2015 Sep 3;97(3):501. PMID: 26140447; PMCID: PMC4570999.

4. https://www.ama-assn.org/system/files/2019-06/code-of-medical-ethics-chapter-2.pdf

5.Wertz DC, Fletcher JC, Mulvihill JJ. Medical geneticists confront ethical dilemmas: cross-cultural comparisons among 18 nations. Am J Hum Genet 1990; 46:1200–13.

6. Pencarinha DF, Bell NK, Edwards JG, Best RG. Ethical issues in genetic counseling: a comparison of M.S. counselor and medical geneticist perspectives. J Genet Couns. 1992 Mar;1(1):19-30. doi:10.1007/BF00960081. PMID: 11651279.

7. Draper H. (2005) Why There is No Right to Know One’s Genetic Origins. In: Athanassoulis N. (eds) Philosophical Reflections on Medical Ethics. Palgrave Macmillan, London. https://doi.org/10.1057/9780230273931_4

8. Sokol DK. Truth-telling in the doctor-patient relationship: a case analysis. Clinical Ethics. 2006;1(3):130-134. doi:10.1258/147775006778246531

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