- Misattributed paternity
Misattributed paternity is the situation when a child’s putative father is not the child’s biological father. Misattributed paternity is not a rare phenomenon, its true incidence is not known, but medical students are routinely taught that the figure is in the 10 - 30% range. Recent research suggests this figure may be too high, and the correct figure may be lower than five per cent, at least for Western Europe, North America and Australia. Genetic testing for purposes other than establishing paternity has the potential to unintentionally yield information regarding a child’s paternity. This generally occurs in two different scenarios. The first and less complicated scenario occurs in searches for a suitable bone marrow or organ donor and the patient’s family members are tested. The second more controversial scenario is in the course of a genetic risk assessment for reproductive purposes.
Misattributed paternity in organ donation
When misattributed paternity is exposed during the search for a suitable organ donor, it is ethically and legally acceptable to not disclose the information. This is because there are many reasons why the child would not make a suitable organ donor, and the fact of a non-match is not directly relevant to future reproductive or medical decisions.
Misattributed paternity in genetic counseling
In the context of a genetic risk assessment for reproductive purposes, a finding of misattributed paternity is more problematic, both ethically and legally. A classic example of this scenario is when a couple approaches a genetic counselor after the birth of a child with an autosomal recessive disorder, such as Tay Sachs, where both parents must be carriers of the trait. The test reveals that the father is not in fact a carrier and therefore cannot be the biological father, unless the disorder was caused by a mutation, which is a very negligible risk. The result is that instead of future children having a 25% chance of being affected, the chance is close to zero.
There are issues with the genetic counselor withholding the information, fully disclosing the misattributed paternity finding, partially disclosing the information, or attempting to address the issue before testing as part of the informed consent process.
Currently, there is no consensus on the appropriate approach a genetic counselor should take with respect to misattributed paternity, there are proponents for each approach. A 1983 report of the President’s Commission for the Study of Ethical Problems in Biomedicine and Behavioral Research recommends genetic counselor’s employ full disclosure. In contrast, in 1994 the Institute of Medicine’s Committee on Assessing Genetic Risks recommends that the genetic counselor disclose the information only to the mother. The Hereditary Disease Programme of the World Health Organization declared that there is probably never a situation in which the information should be disclosed to the presumed father.
Surveys of genetic counselors indicate that an overwhelming majority, 96 - 98.5%, would not divulge misattributed paternity results to the presumed father. In addition, only 60% would include information about misattributed paternity on an informed consent document. Therefore, genetic counseling custom appears to be in line with only telling the mother, or not disclosing misattributed paternity to either party. Courts often consider custom as evidence of what a reasonable physician would do in similar circumstances, which is the standard for medical malpractice.
- Full Disclosure: Proponents of full disclosure focus on the duty created by the counselor-patient relationship. The counselor has a duty to both the man and the woman. Both enter genetic counseling with the belief that they will obtain information regarding their genetic makeup and the risks of future reproduction. If the information is not disclosed, patient autonomy is defeated because the parents are not given all pertinent information on which to make an informed decision. If a man is not given accurate information about his genetic makeup he may have a claim against the genetic counselor for medical malpractice. In addition, it is argued that paternity will eventually be discovered, and earlier disclosure will be less detrimental to the family relationship. Arguments against full disclosure are based on the protection and importance of family structure and concerns about the harm the disclosure may cause the woman and child. Proponents of this approach disregard these concerns, genetic counselors are not marriage or family counselors and family preservation is not the counselor’s field.
- Disclose Only to the Mother: Disclosing the misattributed paternity only to the mother allows her to decide what to do with the information and avoids the problem of misrepresentation that accompanies nondisclosure and partial disclosure. Revealing misattributed paternity only to the mother also serves to protect supposed "family integrity". This approach places the confidentiality and privacy rights of the woman above the right of the man. In this scenario, the man will not have true knowledge about his genetic makeup or risks of future reproduction. It may also cause the man to become suspicious and seek paternity information independently.
- Partial Disclosure: Partial disclosure involves some misrepresentation of the facts (i.e., lying). This would probably involve the counselor informing the couple that the risks of future children being born with the disorder are negligible but not giving an accurate explanation for their current child’s condition. Alternatively, the counselor may avoid the discussion by stating that the results are inconclusive. While based in protecting the family structure and preventing harm that may come to the woman and child, these approaches are cause for concern. The information may lead the couple to make inappropriate reproductive decisions based on the information, will engender distrust in the counseling profession, may lead the presumed father to become suspicious, and the non-paternity eventually discovered. In addition, if the deception surfaces, the parents may have a claim for medical malpractice.
- Nondisclosure: Nondisclosure, or withholding the results from both parties completely defeats client autonomy. The genetic counselor is making the decisions for the clients. The clients are not given any information on which to make informed reproductive decisions.
- Informed Consent: The final approach is to address the possibility of unanticipated information, including misattributed paternity, in the informed consent process. After the counselor discusses this possibility, the clients decide whether or not the counselor will reveal this information after testing. This approach is the most conservative approach for the counselor, it places the decision of what will be disclosed in the hands of the clients. Informed consent promotes patient autonomy, and allows the counselor to be open and treat both the man and woman equally. There are ethical concerns with this approach, which arise in cases where the woman has doubts about the child’s true paternity. The problem is that the couple must come to an agreement about what to do with the information. If the woman does not want to know about the misattributed paternity and the husband does, the woman is not given a full autonomy. She will be admitting to infidelity or hoping there is no misattributed paternity finding. If the woman is allowed to unilaterally decide that misattributed paternity will not be disclosed, the man is not given full autonomy and is not treated equally in the counseling. In addition, the woman may decide against counseling and the couple might make reproductive decisions based on inaccurate assumptions.
- Jane McEwen, Genetic Information, Ethics, and Information Relating to Biological Parenthood, 1 Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology 356, 549-362 (Thomas H. Murray & Maxwell J. Mehlman eds 2000)
- Kelly Brown, Genetic Counseling, 29 Journal of Legal Medicine 345 (2008).
- Erica Lucast, Informed Consent and the Misattributed Paternity Problem in Genetic Counseling, 21 Bioethics 41(2007).
- President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Screening and Counseling for Genetic Conditions: A Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. Washington, DC: U.S. Government Printing Office [GPO], 1983.
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