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?
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.
The decision
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?