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Introduction
Human genetics and cytogenetics are relatively new fields, and for
this reason a large number of physicians and research investigators have
completed their formal training with little or no information of this science.
Within the past decade there has been an enormous addition to our knowledge of
human genetics. As our probing continues, our conscience undergoes more and
more self reflection.
This concern is shared, in a unique way, not only by the medical
profession but by much of society itself - patients, families, the legal
profession and the communications media, to name a few.
The art of genetics has reached the point where it has now assumed its
rightful place in the total care of the patient and we believe that it is
incumbent upon the scientific community to develop an ethical code addressed to
the problem of how best to handle genetic information once obtained.
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Coordinators :
1. Should genetic information be placed on the medical record?
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Dr.Lejeune :
Your questions are so pertinent that answers are extremely difficult
for the very reason that genetics involves not only the patient but also his
family (in the very broad sense of the term).
Genetic information must be placed on the medical record of the
family physician or on the files of the geneticists. It cannot be made
available to everyone, even if they are an M.D.
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Coordinators :
2. To what extent is an investigator obliged to divulge this
information to the patient, family, and attending physician?
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Dr. Lejeune :
If the patient can be endangered by concealing information, this
must be disclosed to the patients or the attending physician.
Eventual data of voluntary abortions, illegitimacy and other things
alike must be kept secret.
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Coordinators :
3. What guidelines do you use at the present time in communicating
genetic information to the scientific literature or the mass media? How did you
obtain your guidelines? What are your thoughts on formulation of
guidelines?
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Dr. Lejeune :
The guidelines are essentially derived from the Hippocratic oath. In
any public statement or publication, the identity of the patient must be
concealed so that no recognition of individuals is possible.
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Coordinators :
4. Should all newborn be screened and the genotype be made a part of
the permanent record? To what extent should this information be communicated to
the parent or anyone else?
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Dr. Lejeune :
The screening of all newborn can be envisaged only theoretically.
The parents alone would be entitled to ask for such information.
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Coordinators :
5. What would you do if public and parental pres-sure demand that
the par-ents of offspring with anom-alous genotypes be informed?
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Dr. Lejeune :
Anomalous genotypes produce abnormalities. Hence if parents ask the
cause of the abnormality of their child there is no reason to conceal it,
except in special cases in which a translocation is observed in one of the
parents and demonstrated to be the cause of the disease of the child, in which
case the secret must be kept absolute.
The carrier parent is offered a private interview. The case is
explained to him alone, and he decides whether his conjux must be told. Up
until now, in some cases, the carrier asked for an explanation to be given to
his conjux and the matter was discussed with both of them, separately and then
together.
Should the carrier have decided his own conjux should not know, the
entire secret would have been kept.
In no case should such findings be made available to others, even
family doctors, before full consent of the carrier is given.
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Coordinators :
6. If you are asked to acquire the genotypes of a group of
noninstitutionalized individuals and a num-ber of anomalous genotypes were
found, such genotypes carrying a potential stigma, how would you handle the
situation?
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Dr. Lejeune :
Such a case has happened. In each case, the carrier was offered an
interview in full privacy and the personal explanation I gave was: "The
examination gave abnormal results, possibly wrong, but in your own interest, a
second check would be eventually useful to detect something of possible concern
to your health."
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