The Truth, the Whole Truth or Anything But the Truth?

Problems with DNA Testing in Genetic Counseling

Introduced by Maureen Boost

Notes on the 27/1/03 meeting of HKPC's Kowloon Branch

Reported by Steve Palmquist (moderator)

Maureen introduced the topic (click here to read her own notes [not yet available]) by directing our attention to an interesting fact about DNA testing of children: sometimes a test being administered for an entirely different purpose can reveal that the mother’s husband is not the true father of the child. This creates a difficult dilemma for the doctor administering the test: to whom should the truth be told? The mother? Her husband? In some situations (as when the tested child has a serious genetic disease) knowing such information could be crucial in helping the couple to make an informed decision about whether or not to have another child. Yet revealing such information carries obvious risks, because of the trouble it could create for the marriage. When surveyed, the vast majority of doctors report that if faced with such a situation they will simply lie, though slightly more would tell the truth to the woman but not the man. Interestingly, 75% of patients surveyed thought the doctor should tell the man as well. Maureen presented compelling arguments for both sides of the debate, which I will not attempt to summarize here. She concluded by presenting the matter to us as an open, unresolved question.

One of several interesting contrasts that arises out of such a dilemma is the distinction between its ethical and its legal implications. The legal side was raised immediately during the question time, and came up again from time to time throughout the discussion. It was quite clear, though, that the problem cannot be solved by law alone. Rather, the true dilemma here is an ethical one. That is, it relates to the personal moral decision-making of the doctor. As such, it illustrates the classical ethical dilemma, whereby making what seems in one sense to be the best choice (i.e., telling the truth) ends up having a potentially harmful effect (e.g., disturbing the peace in an otherwise happy marriage).

Maureen reminded everyone that the first and foremost principle that is supposed to guide the actions of medical doctors is “do no harm.” (This is known as the “Hippocratic Oath”.) The problem is that the medical profession gives doctors virtually no guidelines as to how best to act in situations like the one presented here. Doctors are left entirely on their own to face the conflict between the basic principle of medical ethics (“do no harm”) and an important principle of personal ethics (“tell the truth”).

One participant suggested that this difficulty could be significantly reduced simply by telling the parents at the outset about the possible unintended information their child’s test might reveal, and then requiring them to agree on in advance on what information the doctor should disclose, and to whom. Australia is the only place Maureen is aware of that has implemented this type of policy.

One of the many interesting questions raised was whether this dilemma is unique to doctors. Maureen responded that it is, at least in the sense that the Hippocratic Oath is a principle applied specifically to doctors. However, similar conflicts might arise in other professions, where the professional is assumed to be abiding by some ethical standard that could conflict with what would seem right from a non-professional’s point of view.

Another good set of related questions was whether the doctor has a right to tell such information to anyone other than the mother (because of the confidentiality involved), and whether the mother has a right to demand that the doctor tell her the information. Maureen explained that most doctors believe they and only they have the right to decide in such situations, because they are the ones best able to judge how to avoid harming the people involved. Here, when questioned by one participant, Maureen reiterated the fact that astounded many of us: that 96% of all doctors who believe such knowledge would be harmful claim that they will simply lie to the mother even if she asks explicitly to know what the test showed about the paternity of the child.

In hopes of making such doctors’ actions seem more justifiable, one (French) participant pointed out that in France it is against the law for a doctor to reveal any test result that would show that the legal father is not the true father of any child who is less than nine months old. Why? Because the law regards the child’s interests as most important (because the child is the weakest one involved in the situation) and deems that keeping the family together at this time of the child’s life should be its paramount concern—even more important than telling the truth. He strongly objected to the Australian law, on the grounds that it treats the truth as a higher value than the well-being of a child. Later, he clarified that in France a marriage contract assumes that the husband is agreeing to take care of his wife’s child(ren); paternity is not an issue.

Before dividing into small groups, I suggested that the groups might want to focus on one or more of the following questions: Is this dilemma unique to doctors? What should doctors do in such situations? and Does the biological father have a right to know about the true identity of his child?

The small group I joined started by discussing the Hippocratic Oath and agreeing that it is a good ethical principle. But based on that principle, however, which option causes the deepest and longest-lasting harm to everyone involved: a child growing up with incorrect assumptions about his or her paternity, or a child’s legal parents being forced to face the truth about the wife’s previous sexual activity? I raised the question whether parents (fathers as well as mothers) have a right to know that they are parents, and pointed out that it seems strangely hypocritical to complain on the one hand that fathers tend to act irresponsibly but then to assume on the other hand (as some people in the earlier discussion seemed to be assuming) that fathers need not even be informed when their actions have led to the birth of a child. One group member pointed out that a patient-doctor relationship generally involves some kind of payment and is therefore based on a contract; as such, whoever pays the bill should have a right to know the results of the test. (The problem with this, as Maureen pointed out later, is that in Hong Kong such tests are free!) Another member agreed that to keep the information from the biological father is to create a potential disaster: respect should be the key principle that guides a doctor’s actions in such circumstances, yet the doctor who refuses to tell the truth is failing to respect the couple as well as the biological father. Not the doctor, but these very people are the ones actually responsible for the child’s well-being; so by not telling them the truth, the doctor is doing the greatest possible harm to the child.

When the groups reconvened, one person reported that his small group had not agreed: some members thought the system should be kept as it is, under the doctor’s full discretion, while others thought the doctor should be required to tell the truth. Maureen pointed out that this could put the mother in a very difficult situation. But another participant responded that this is only proper, since her actions (assuming someone other than her husband impregnated her) led directly to this awkward situation. She is the very person who ought to be most responsible for solving the problem. If a decision were required before the test was actually taken, this would require the woman to face this fact even earlier on: if she showed reluctance to take the test, her husband would probably want to know why.

Most (though not all) participants seemed to agree that, though it is the most painful option, the honest approach is best in the long run. A family is a unit, so both parents should be kept informed on such crucial matters. In such situations, doctors have no business making a judgment about what will cause the least harm. For me this was the crucial insight of the whole discussion: this dilemma only exists because doctors are applying the Hippocratic Oath to a situation that is not strictly medical. Doctors are not counselors and should therefore not be making decisions based on the incidental psychological or emotional strain that might be placed on those they are treating. Here I noted the relevance of Kant’s famous “Enlightenment” attitude toward such matters: “Every man [person] his own doctor, his own lawyer, his own judge” was Kant’s ideal.

The French participant then argued that sometimes hiding the truth can be more moral than revealing it. But several others responded by going even further in the opposite direction: the doctor should not even give a vague or misleading answer, since this shows a fundamental disrespect for the decision-making ability of all those involved (other than the doctor); the French system imposes a duty to lie onto the doctor, and this is fundamentally wrong. A better option is to focus on educating people at the point when they first begin inquiring about the test, as is the practice in Australia. Our Frenchman tried repeatedly to defend his country’s approach, e.g., by claiming the privacy of the individual (i.e., the child) is violated by telling anyone about his or her genetic parenthood. But this only brought on the rebuttal that the real reason for the French policy is just to enable Frenchmen to live in the immoral way their society has come to expect without ever having to face up to the implications of their actions. Adamant that this is not correct, this exceptional Frenchman insisted that the policy is solely intended to protect the weak, and that it does this better than any other alternative could.

Another participant responded to the latter by asking the all-important question: Is something rotten worth protecting? Protecting children is good; and protecting families is good. But such protection is only worthwhile if it is based on knowledge rather than deceit. Focusing the issue back onto the question of the child’s harm, I asked: Which is better for the child, an easy life lived under the umbrella of a lie, or a hard life that forces a person to face the truth? With only a few (very outspoken) participants still disagreeing with the implication that the latter would be the better choice, the meeting ended with a few closing words from Maureen.

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Before leaving, some participants offered the following suggestions for future topics:

- Does DNA determine our personality? (or: Innate vs. acquired character)

- Should society protect the weak?

- Euthanasia and suicide

- The difference between humans and animals

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This page was uploaded on 26 February 2003.