Revealing False Paternity – Ethical Considerations

An increasing number of conditions can be diagnosed at molecular level.

Presence in one family member often leads to investigation of others for carrier status, likelihood to develop the disease and for genetic counseling.

But : sometimes get information not requested by the patient – most often this is information that paternity has been falsely attributed.

In combination with a confirmation of a genetic disorder, this can have consequences for both partners for their future reproductive choices.

Example: John and Mary have a child diagnosed to have a severe and debilitating disease. The gene for the disorder can be mapped and prenatal diagnosis offered in a future pregnancy. John and Mary each provided a blood sample and one is taken from the child. Molecular analysis shows John cannot be the father. The couple had been informed initially that a further child would have a 25% chance of also suffering from the disorder, but as John is not the father and only 1 in 1000 carry the disease, this is no longer the case. So, should the geneticist disclose the findings to the parents when they return to the clinic for their follow up visit?

Remember – they did not ask about paternity! – but of course it does affect the outcome of future pregnancies – and they did want to know about this.

The literature supports the view not to tell the husband (1983 President’s Commission on the Ethical Issues of Genetic Testing; 1994 Committee on Assessing Genetic risks of the Institute of Medicine). The rational is not to disrupt families. Of 500 genetic counselors surveyed in Europe and USA, only 1.5% would disclose the information to the father. In another study of 1000 geneticists, 96% thought protection of the mother’s confidentiality overrides disclosure of true paternity. Of these 96%, 80% would tell the woman. The remaining 20% would lie saying the lab made a mistake about the risk or that it was a new mutation or just be vague. However, a survey of patients gave a different result – 75% (mainly women) thought the doctor should tell the man if he asked about his paternity, though only 17% of doctors agreed.

Let us consider the ethical issues:

Against disclosure:

Most clinicians would tell Mary and let her decide whether to discuss this with her husband.

A. To tell John would breach her confidentiality. If in the case of a normal child, Mary had told her doctor that John was not the father, it would be considered inappropriate for the doctor to inform John, even if John was his patient. So is there a morally significant difference?

This information was not gained from a confidential discussion with one parent but from tests to which both had consented Both parents attended the clinic about an issue of joint concern. To inform Mary alone would not respect John’s right to the information.

In the case of prenatal testing only a woman has the right to decide to have the testing done and to choose whether or not to terminate the pregnancy – but does the doctor have a duty of care to the husband in this case. If only Mary is informed, is John treated unequally? Does the information of misattributed paternity only belong to Mary? This must be debatable!

B. Telling John may undermine the relationship of trust between doctors and patients. If it is known clinics disclose this information, may deter others from seeking help – and important information about risks and prenatal diagnosis would be missed. But patients may trust clinics to give them all the information and may be upset to know it is being withheld. There may be information about genetic problems in the biological father’s family which could affect the child and failure to disclose this could also harm the child.

C. Disclosure can undermine the family – cause the couple to split up, lead to violence. John may leave and the family is financially unsupported. So disclosure could constitute a breach of the doctor’s duty of non-maleficience to both the parents and the child. But here the doctor is making a prediction of behaviour that may not materialize. Revealing the truth may allow the parents to sort out their problems. Is it right to assume that Mary needs to be protected from the consequences of her actions or that she is unwilling or incapable of taking responsibility for them? Could the resolution of these problems even be in the interests of the child?

D. The couple came to find out about genetic risks – not to discover paternity of a child. The finding of non-paternity is incidental. There is no need to answer questions which have not been asked. But this is not truly incidental as it bears on the risk – and certainly affects that risk.

For disclosure

What is best for the couple or best for the child? Should the geneticist try to protect the couple from splitting up? Can the geneticist make an accurate assessment of this? Is it more responsible to give the couple the information and let them make an informed decision?

1. Clinicians should respect the rights of patients to make decisions about their own lives on the basis of adequate information. By failing to reveal false paternity, they undermine the couples’ ability to make an autonomous decision about future pregnancies. The goal is to promote autonomy, help clients understand their options and choose a course of action appropriate to them in view of risk and family goals. Without accurate information, couples may make the wrong choices. The risks and options for prenatal diagnosis explained were based on the premise that John was the father. If the false paternity is not revealed, they may decide not to risk further pregnancies. Mary may have to undergo unnecessary prenatal diagnosis. She may do this either not knowing John is not the father, or even if she suspects he is not. Prenatal diagnosis has between 1 in 50 and 1 in 200 risk of miscarriage. John may even feel he has a better chance of healthy children with another woman and leave Mary for someone else. In any case he will believe he is a carrier when he is not.

Sarah may have suspected the paternity, she may have sought the genetic testing to confirm her suspicions. If she is not told she may believe John is the father and this may lead her to other misinformed decisions.

Not to tell the couple is paternalistic. The doctor is making a value judgment about what the couple need to know or not to know. Some years ago diagnosis of cancer was withheld as it was considered better for the patient not to know – but this rarely occurs today. So even if one believes that disclosure could harm the relationship, both should be informed.

The decision

How often does non-paternity occur - depends – 1% - 30%. Also in rare cases, it can look like non-paternity but further testing shows that this is not the case. One must be certain of genetic findings before disclosure. This solution is now being introduced in Australia in the form of a leaflet given to clients seeking counseling. It can also be mentioned verbally before testing but surveys in Europe and North America suggest this is not being done. By bringing this issue into the open before results are available may help the couple to discuss the issue earlier. One can raise the possibility before testing is done – but this can also cause distress. Should you distress many to avoid the rare case?How often does non-paternity occur- depends – 1% - 30%. Also in rare cases, it can look like non-paternity but further testing shows that this is not the case. One must be certain of genetic findings before disclosure.This solution is now being introduced in Australia in the form of a leaflet given to clients seeking counseling. It can also be mentioned verbally before testing but surveys in Europe and North America suggest this is not being done. By bringing this issue into the open before results are available may help the couple to discuss the issue earlier.

The Implications

This case study looks at one situation where genetic or other laboratory testing can reveal information which was not requested but may have significance for that person or another family member or even to employers, insurers, co-workers etc. Who has the right to know and who has the right to confidentiality?