Amniocentesis to detect any abnormalities of the fetus, the October 3, 2001 in Levallois-Perret (D.PALLAGES / AFP).
recent years, laboratories have developed techniques for analyzing fetal DNA circulating in maternal blood. This technique was first used to diagnose specific diseases, such as gender-related diseases or phenomena of Rh incompatibility between mother and fetus. Advances in technology now allow to identify, from a simple blood test for pregnant women, possible chromosomal abnormalities in the fetus, this screening must be completed with a diagnosis obtained after amniocentesis.
Faced with very encouraging results reported by the laboratories, and to that of other European countries, including Switzerland and Germany have accepted the marketing of these tests, the Directorate General of Health took to review the National Consultative Ethics Committee (CCNE). This notice was published April 25, 2013 under the title “Ethical issues associated with the development of fetal DNA in maternal blood tests.”
genetic testing progress for pregnant women
editors favor the proposal of genetic testing to all women categorized at risk, either because of the existence of a family history or because they have been classified at risk by the method of combined screening (maternal age, measurement of fetal neck ultrasound 12 weeks and dosage of serum markers of trisomy 21). For the CCNE, the acceptance of these tests is inevitable (p. 4):
“The question is more to estimate the conditions under which such tests could be used to imagine that they might not be.”
arguments for the introduction of these tests are several orders.
. 1 The first order is technology : This test is much better than currently available tests, which do not rely on the identification of genetic characteristics of the fetus, but a risk calculation. Because of its performance, it also avoids a significant number of amniocentesis to establish a definitive diagnosis, amniocentesis which are exposed to risk of miscarriage or fetal or obstetric complications, albeit small but resented by prospective parents and the medical world.
. 2 A second order argument made is that of the slippery slope: by not allowing these tests when they are sold in neighboring countries, paving the way for inequalities in women’s access to these tests , the most favored can go their own way to achieve the outside national borders.
automatic link between fetal abnormality and abortion
editors of the opinion, however, noted (p. 21) that “the introduction of a reliable molecular test is [...] progress for pregnant women. If you do not see any reason a priori of the question, the terms of its practical realization wondering about: 1) the conditions of a real choice (or decision) on the part of pregnant women, including the quality of information and the time left to the decision, and 2) the risk of trivializing or standards related to the seemingly innocuous and easy to implement this test character, seen by some as a shift “
.
They add, moreover, that the possibilities for analysis of fetal DNA is not limited only to the detection of trisomy 21: a laboratory has already also search for trisomies 13 and 18. And it is probable that in the very near future, we can also increase the number of identifiable conditions this simple blood test.
difficulty of the exercise of screening and prenatal diagnosis, especially regarding trisomy 21, is the diagnosis of this condition can lead to any proposed treatment and, often, the only solution parents is that of abortion to avoid giving birth to a child with Down syndrome.
implicit link between the detection of severe fetal abnormality and abortion is so automatic that recently, the press did not hesitate to take in stride, about the pregnancy of a French swimming star, she was “forced to abort” after prenatal diagnosis.
information for pregnant women remains rhetoric
response CCNE is not surprising in itself. It is consistent with the previous opinions on similar issues, and we can give him that, as genetic testing covers only trisomy 21, it is ultimately still the same configuration since 1997 (the date of repayment by the Security Social early serum markers T21) or 2009 (start of the combined first trimester screening), but adding in a stage career of the pregnant woman.
can however regrettable that this referral CCNE has not been an opportunity to open the debate on more information for pregnant women. If it is, as in any bioethics literature, considered essential in order to allow the woman or couple to reach an informed consent, the question of the conditions of the information is not rhetoric and conditions recommended by the CCNE .
me however seems that this referral could be an opportunity to reopen the issue of information too quickly evacuated. On serum markers of trisomy 21, offered to women since 1997 in France, the work of social scientists have highlighted the lack of information for pregnant women, their difficulty in understanding the routine offer of testing does not mean its mandatory nature, the test results were not always well understood, some women have a hard time hearing that they represented a risk and not a certainty.
work Romain Favre have also shown that the level of knowledge of the practitioners themselves on testing was incomplete and uneven, creating doubt on their ability to properly inform their patients. My own research with Carine Vassy to the Biomedicine Agency and the project of the National Research Agency “Disability and prenatal diagnosis” showed the difficulties of information for pregnant women in the context of a first pregnancy consultation, including multiple objectives leave little time to address the issue of screening.
administrative constraints (up the file of Obstetrics), medical (examinations to be performed, analysis of the medical history of the woman) and organizational (time limit set by consultation) reduced to a bare minimum the discussion of tests (3 minutes on average over a 30 minute consultation), which were to explain the technical characteristics of the test very quickly and to sign the consent form in stride.
Making women and couples involved monitoring of pregnancy
These conditions, which have been observed in hospitals fall far short of the ideals of bioethics or even the recommendations of the High Authority for Health, which recommends in its 2005 report “How to inform pregnant women” , to issue these “simple, understandable and appropriate information about the nature of the review, the significance of the results, the potential for prevention as well as its limitations, the implications of the use or existence of a non-use of screening, but also trisomy 21 itself, the life expectancy of people and opportunities for development and social integration. ” The presentation of trisomy 21 itself was largely absent from the discussion.
These observations, even fragmented, allow the question of where and how the information. For families with a history of genetic disorders, consultation with geneticists prior to the completion of prenatal diagnosis allow a substantial discussion of the risks, diseases, techniques at their disposal. If it is not possible to imagine, because of its complexity, such a device is offered to all pregnant women, however, it is urgent to consider how to achieve a much more important information that probable evolution of fetal genetic testing in maternal blood will broaden the scope of detectable conditions and choices to make.
Physicians should they be the only ones authorized to deliver information at a time when the lives of individuals is increasingly framed by biological standards that redefine the conditions of citizenship (cf. the work of Nikolas Rose biosociality on)? Imagine what system to make women and couples full actors of their decisions necessary for pregnancy? Could we not imagine other places for exchange and sharing of information to promote the empowerment of women or couples rather than reproducing a pattern for pregnancy lack of preparation and time
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